Dysautonomia Specialist Consultation
I stupidly packed in a crazy weekend after a long specialist appointment that left me exhausted and shaky. I'm now ill and still recovering. For me this means achey, sore, lots of headaches, migraines, nausea, sweating, utter exhaustion and the inability to do much of anything. I need to figure out things to eat on days like this when I can't cook and have to wait until my bf comes home to cook super. I also have to figure out within myself a way to live. I can't go see people and do what a normal person does, my body just shuts down. If I keep going past the first indicators I get super messy. I digress, back to the appointment.
Many people have been asking what happened at the specialist. It's such a long story that I may have to take a few days to write this and I'm sure I will miss a few things, especially as I feel ill and this is hard to write.
One night I was talking to my oldest sister and we were talking about the possibility of ABI (Aquired Brain Injury) groups and other ways I might be able to work towards something. I was frustrated at not getting better and being more and more immobile, ill and lost. We talked of the dysautonomia website (www.dinet.org) that is the epicentre for P.O.T.S. patients. We both saw that in Canada there were 5 physicians listed that dealt with my disorder; two in Montreal, one other in Quebec and two that work together in HAMILTON, Ontario. Hamilton is pretty close to us. For once I'm glad I don't live in Vancouver anymore. What would I have done then? So with her encouragement, I was able to get the confidence to ask my Neurologist to ask about seeing him. I felt just as nauseous from nerves before asking my doc this question as I did with some POTS symptomatic nausea. I knew I just had to ask anyways. My Neurologist didn't seem to happy about it and said basically, I don't see what they will do differently but I persisted and he sent the referral for me. This was quite awhile ago, maybe September 2012. I finally heard back around Nov. 2012 that I could be seen January, 24, 2013 at 1:45pm for a 75 min. consultation. I had to fill out a 30 page questionnaire that took forever but was very fascinating, as the doctor said later on, I definitely saw myself in many questions.
I was so nervous and so excited at all the possibilities good and bad. I just knew I had hit a wall after two years and needed to try something different. With this disorder it seems like doctors and everyone around me just doesn't understand what is wrong. It's a very new disorder I guess and it's quite rare but it's so hard to deal with being so misunderstood when you know something is so very wrong. So many people think it's all about just "getting up and going" or just generally assume it's not a big deal. My thought that was maybe at this clinic they will better understand me and help me move in another direction. As well maybe they can help give me answers that will be able to allow me to better explain scientifically why I feel so awful and what is so wrong with me.
I went to see Dr. Juan C. Guzman at the cardiac unit at Hamilton General Hospital. They work with McMaster University, I believe in terms of medical research.
First of all on a random note, you think a place like that would have a chair at the front desk but no. I spent most of the time leaning on the desk at check in and check out, feeling yucky. I had an EKG which started off giving me confidence in this place. First of all the lady called my named then zeroed in right at me before I even said anything or made any indications. She explained herself right away, you stand out in the crowd. I looked around, I guess I did. I was the only young person in the room by far. Most were in wheelchairs as well. Laying down on the gurney with electrodes on the nurse/technician talked to me with all the knowledge of POTS that I longed for. She was waiting for my heart rate to go down, from getting up and walking into the room, before she did the test. She said so you are seeing Dr.Guzman for POTS. She asked all questions that were pertinent and I didn't have to explain a thing. She wasn't shocked and asking a million questions of what was wrong with me. She just understood. Above all she was nice and understanding. [Sigh]
I then went back to the waiting room. Dr.Guzman came in and called me but I couldn't hear a thing. Darn loud HVAC unit. I think he asked for me 3 times. I was so nervous as I wanted this to work out so much. I can not begin to say all that happened or what was said but I want to pre-empt everything by saying, I'm so glad I went.
"POTS is different in every patient", as I knew but Dr.Guzman said we have to "find out what type of POTS you have so that we can properly treat you". I had no idea there were types. So that is the big synopsis of our meeting. We need to figure out what I have to see where to go. POTS comes along with a group of secondary diseases and disorders like MS (Multiple sclerosis), EDS (Ehlors Danlos Syndrome), HIV, CIDP, Addison's Disease, Lyme Disease, Diphtheria, Chagas Disease, Guillain Barre Syndrome, Diabetes, Sjogren's Syndrome, Cancer, Lupus, Celiac Disease and other auto immune diseases. I knew of these but am happy they are going to look into these other options and rule them out. We know outrightly by symptoms and previous tests that some are already ruled out but I'm glad to know we will be looking at things thoroughly. On the day of my consultation I had the EKG, 8 vials of blood taken along with a urine test and heart and blood pressure checks while lying down, sitting and standing (eekk). With the standing tests, I became hot, flushed and started sweating a lot, my blood pressure also rose absurdly. Most POTS patients have their blood pressure drop. When I'm quite ill and I check at the pharmacy blood pressure machine I have very low blood pressure. I had to sit down and then I had the shakes - tremors as they call it. I had to put my jacket on and couldn't warm up. From the rise in blood pressure Dr. Guzman said that he thinks I have what is called Hyperadrenergic P.O.T.S. He said without any other test results he's not comfortable to say for sure but now that I've read about it, it makes a lot of sense to me. Stay tuned in the future for more info. Apparently it is a rare type of POTS, lol. I've read that about 500 000 - 750 000 people have POTS in the USA and about 5-10% of those people have the Hyperadrenergic POTS. There's also another subset called Hyperadrenergic MCA (Mast Cell Activation) POTS which constitutes probably 10% of Hyperadrenergic POTS. So basically any way I'm probably one in a million or one in even more. Who knows about Canadian statistics and the world? I'd like to ask more about the MCA subset next time I see Dr.Guzman as I see myself in some of these symptoms, those that I understand. The MCA version though is very unknown as it is so rare and most info on it is in the clinical research stage. We'll see. I have to still do a stress treadmill test. Yes that means I have to try to walk or run until failure. They want to monitor me and see my failure point. Wish me luck on that one. Secondarily I have to do this other not fun test, a 24 hour urine collection. Basically it will see if I am loosing too much adrenaline, test my sodium, possible low blood volume and my level of output (extensive or lacking). This is what I've gathered from from what I've read online. Enough said about that one - SO EMBARRASSING. I will probably be seeing a gastroenterologist. I'm already going to see a urologist. I may also be seeing someone to test for allergies. He also talked of genetic testing. The other specialist at this clinic is apparently a cardiologist. He said they are also looking for funding to be able to test for EDS (Ehlors Danlos) as testing isn't available in Canada and isn't covered.
So basically, I have to set up the stress test and do the 24-hr test and then wait for results.
In the future I will be a part of what sounds like a research/rehab clinic, where they will monitor me, try different medications and have me workout. I can choose between Toronto and Hamilton. He was saying that exercise is very important. I wasn't sure what to do as when I did anything physical I was sick in bed for days with exhaustion, pain, headaches and nausea. I've also been sick before too from it. I didn't want to make things worse. He says "YOU HAVE TO EXERCISE" your leg muscles. I've heard from other sources that stomach muscles exercises are also necessary for POTS patients. Is it sad that my first thought was of the excitement of the social aspect of getting out of the house and getting to meet other people with my disorder at the clinic? Secondarily I was super excited at the thought of someone helping me out, understanding me and the possibility of working towards something better than the life I have now. I long to be able to cook, wash the dishes, shower, brush my teeth without having to sit on the tub, kiss my bf while standing, dance and my biggest dream is to run. I could make a couple pages of lists of items I wish I could do again. How often are life's seemingly little joys taken completely for granted?
Dr.Guzman has encouraged me to read about POTS as much as I can. To take my own health into my own hands. All the medical stuff is so confusing but it is better to know and do something than to simply try different medication and hope for the best.
He and I talked about so much, I can't write it all. Hopefully over time I will understand more and be able to convey it in words properly. He seems to think I had this disorder all my life and that through my concussion that it emerged so much more intensely from the inactive and trauma. Basically he says your body shuts down regularly as well and that is why so many people faint, because their body is trying to save/help itself. I'm lucky I can gauge when this happens because fainting is one of the most dangerous things to someone in POTS. Can you imagine passing out at the edge of a cliff or fainting on concrete, etc? I can feel it and crouch to the ground or simply sit down. This brings the blood back through my body amongst other things.
He has said that of his POTS patients three things happen. They get worse and then start to get better all the way to a place where they can almost be normal again or cope as he says, the second group gets worse, then start to get better and then plateau and finally the third group they get worse and keep getting worse. He can't say what will happen but if one doesn't work out/exercise then he says they will just get worse as the muscles in the legs help pump your blood and help your blood pressure even if your brain isn't sending the right signals. So I'm glad to know that I can now try even if it's not going to be fun.
Today I felt like hell but in the evening when I felt less awful, I jumped on the bike for 20 mins. I feel so awful now but I don't want to get worse. At least I didn't throw up, right??... yet.
I'm very happy I went and am now looking forward to something now. Feel free to ask questions as I'm sure I missed something. XOXO Thank you for reading.
Ps. We now have water again at our house. YAY!
Many people have been asking what happened at the specialist. It's such a long story that I may have to take a few days to write this and I'm sure I will miss a few things, especially as I feel ill and this is hard to write.
One night I was talking to my oldest sister and we were talking about the possibility of ABI (Aquired Brain Injury) groups and other ways I might be able to work towards something. I was frustrated at not getting better and being more and more immobile, ill and lost. We talked of the dysautonomia website (www.dinet.org) that is the epicentre for P.O.T.S. patients. We both saw that in Canada there were 5 physicians listed that dealt with my disorder; two in Montreal, one other in Quebec and two that work together in HAMILTON, Ontario. Hamilton is pretty close to us. For once I'm glad I don't live in Vancouver anymore. What would I have done then? So with her encouragement, I was able to get the confidence to ask my Neurologist to ask about seeing him. I felt just as nauseous from nerves before asking my doc this question as I did with some POTS symptomatic nausea. I knew I just had to ask anyways. My Neurologist didn't seem to happy about it and said basically, I don't see what they will do differently but I persisted and he sent the referral for me. This was quite awhile ago, maybe September 2012. I finally heard back around Nov. 2012 that I could be seen January, 24, 2013 at 1:45pm for a 75 min. consultation. I had to fill out a 30 page questionnaire that took forever but was very fascinating, as the doctor said later on, I definitely saw myself in many questions.
I was so nervous and so excited at all the possibilities good and bad. I just knew I had hit a wall after two years and needed to try something different. With this disorder it seems like doctors and everyone around me just doesn't understand what is wrong. It's a very new disorder I guess and it's quite rare but it's so hard to deal with being so misunderstood when you know something is so very wrong. So many people think it's all about just "getting up and going" or just generally assume it's not a big deal. My thought that was maybe at this clinic they will better understand me and help me move in another direction. As well maybe they can help give me answers that will be able to allow me to better explain scientifically why I feel so awful and what is so wrong with me.
I went to see Dr. Juan C. Guzman at the cardiac unit at Hamilton General Hospital. They work with McMaster University, I believe in terms of medical research.
 |
| Old School Uniform Display at Hamilton General |
First of all on a random note, you think a place like that would have a chair at the front desk but no. I spent most of the time leaning on the desk at check in and check out, feeling yucky. I had an EKG which started off giving me confidence in this place. First of all the lady called my named then zeroed in right at me before I even said anything or made any indications. She explained herself right away, you stand out in the crowd. I looked around, I guess I did. I was the only young person in the room by far. Most were in wheelchairs as well. Laying down on the gurney with electrodes on the nurse/technician talked to me with all the knowledge of POTS that I longed for. She was waiting for my heart rate to go down, from getting up and walking into the room, before she did the test. She said so you are seeing Dr.Guzman for POTS. She asked all questions that were pertinent and I didn't have to explain a thing. She wasn't shocked and asking a million questions of what was wrong with me. She just understood. Above all she was nice and understanding. [Sigh]
I then went back to the waiting room. Dr.Guzman came in and called me but I couldn't hear a thing. Darn loud HVAC unit. I think he asked for me 3 times. I was so nervous as I wanted this to work out so much. I can not begin to say all that happened or what was said but I want to pre-empt everything by saying, I'm so glad I went.
"POTS is different in every patient", as I knew but Dr.Guzman said we have to "find out what type of POTS you have so that we can properly treat you". I had no idea there were types. So that is the big synopsis of our meeting. We need to figure out what I have to see where to go. POTS comes along with a group of secondary diseases and disorders like MS (Multiple sclerosis), EDS (Ehlors Danlos Syndrome), HIV, CIDP, Addison's Disease, Lyme Disease, Diphtheria, Chagas Disease, Guillain Barre Syndrome, Diabetes, Sjogren's Syndrome, Cancer, Lupus, Celiac Disease and other auto immune diseases. I knew of these but am happy they are going to look into these other options and rule them out. We know outrightly by symptoms and previous tests that some are already ruled out but I'm glad to know we will be looking at things thoroughly. On the day of my consultation I had the EKG, 8 vials of blood taken along with a urine test and heart and blood pressure checks while lying down, sitting and standing (eekk). With the standing tests, I became hot, flushed and started sweating a lot, my blood pressure also rose absurdly. Most POTS patients have their blood pressure drop. When I'm quite ill and I check at the pharmacy blood pressure machine I have very low blood pressure. I had to sit down and then I had the shakes - tremors as they call it. I had to put my jacket on and couldn't warm up. From the rise in blood pressure Dr. Guzman said that he thinks I have what is called Hyperadrenergic P.O.T.S. He said without any other test results he's not comfortable to say for sure but now that I've read about it, it makes a lot of sense to me. Stay tuned in the future for more info. Apparently it is a rare type of POTS, lol. I've read that about 500 000 - 750 000 people have POTS in the USA and about 5-10% of those people have the Hyperadrenergic POTS. There's also another subset called Hyperadrenergic MCA (Mast Cell Activation) POTS which constitutes probably 10% of Hyperadrenergic POTS. So basically any way I'm probably one in a million or one in even more. Who knows about Canadian statistics and the world? I'd like to ask more about the MCA subset next time I see Dr.Guzman as I see myself in some of these symptoms, those that I understand. The MCA version though is very unknown as it is so rare and most info on it is in the clinical research stage. We'll see. I have to still do a stress treadmill test. Yes that means I have to try to walk or run until failure. They want to monitor me and see my failure point. Wish me luck on that one. Secondarily I have to do this other not fun test, a 24 hour urine collection. Basically it will see if I am loosing too much adrenaline, test my sodium, possible low blood volume and my level of output (extensive or lacking). This is what I've gathered from from what I've read online. Enough said about that one - SO EMBARRASSING. I will probably be seeing a gastroenterologist. I'm already going to see a urologist. I may also be seeing someone to test for allergies. He also talked of genetic testing. The other specialist at this clinic is apparently a cardiologist. He said they are also looking for funding to be able to test for EDS (Ehlors Danlos) as testing isn't available in Canada and isn't covered.
So basically, I have to set up the stress test and do the 24-hr test and then wait for results.
In the future I will be a part of what sounds like a research/rehab clinic, where they will monitor me, try different medications and have me workout. I can choose between Toronto and Hamilton. He was saying that exercise is very important. I wasn't sure what to do as when I did anything physical I was sick in bed for days with exhaustion, pain, headaches and nausea. I've also been sick before too from it. I didn't want to make things worse. He says "YOU HAVE TO EXERCISE" your leg muscles. I've heard from other sources that stomach muscles exercises are also necessary for POTS patients. Is it sad that my first thought was of the excitement of the social aspect of getting out of the house and getting to meet other people with my disorder at the clinic? Secondarily I was super excited at the thought of someone helping me out, understanding me and the possibility of working towards something better than the life I have now. I long to be able to cook, wash the dishes, shower, brush my teeth without having to sit on the tub, kiss my bf while standing, dance and my biggest dream is to run. I could make a couple pages of lists of items I wish I could do again. How often are life's seemingly little joys taken completely for granted?
Dr.Guzman has encouraged me to read about POTS as much as I can. To take my own health into my own hands. All the medical stuff is so confusing but it is better to know and do something than to simply try different medication and hope for the best.
He and I talked about so much, I can't write it all. Hopefully over time I will understand more and be able to convey it in words properly. He seems to think I had this disorder all my life and that through my concussion that it emerged so much more intensely from the inactive and trauma. Basically he says your body shuts down regularly as well and that is why so many people faint, because their body is trying to save/help itself. I'm lucky I can gauge when this happens because fainting is one of the most dangerous things to someone in POTS. Can you imagine passing out at the edge of a cliff or fainting on concrete, etc? I can feel it and crouch to the ground or simply sit down. This brings the blood back through my body amongst other things.
He has said that of his POTS patients three things happen. They get worse and then start to get better all the way to a place where they can almost be normal again or cope as he says, the second group gets worse, then start to get better and then plateau and finally the third group they get worse and keep getting worse. He can't say what will happen but if one doesn't work out/exercise then he says they will just get worse as the muscles in the legs help pump your blood and help your blood pressure even if your brain isn't sending the right signals. So I'm glad to know that I can now try even if it's not going to be fun.
I was happy to be able to crash in the back room of my friends' kitchen store and relax for awhile after the appointment. I felt so messed and exhausted. I wish I could hang out with people more often. I also wish I didn't have to worry about finances. This disorder has turned my life upside down. So much going through my head so often lately. I feel so busy all the time.
I'm very happy I went and am now looking forward to something now. Feel free to ask questions as I'm sure I missed something. XOXO Thank you for reading.
Ps. We now have water again at our house. YAY!
I've been reading up on POTS as much as possible as my daughter has all the symptoms. Unfortunately we're in Vancouver. We can't seem to get anybody to take us seriously so are now on a waitlist for an expensive appointment at the Mayo Clinic :(
ReplyDeleteI used to live in Vancouver. I wish Canada had cross-province healthcare. I know the flight to Ontario or Quebec where the specialists are wouldn't be great but at least the rest would be covered. I wonder what the costs would be from another province. I hope that your daughter's appointment goes well. At least I've heard good news on the Mayo Clinic. So sorry to hear the finance part. Wishing her and yourself the best of luck!
DeleteHi, I am a boyfriend of a girl with hyper pots .... I have been doing a ton of research on how to help her and I came across your page when I was looking for Juan's phone number. Nikki is my gf and she has had hyper pots for 8 years now. 2 things, I would like to connect you with her if you are interested. hyper pots is a 1 in 50,000 as I am sure you know so it would be interesting for you two to get together some time.
ReplyDeleteNext, about my research, I have found a big link between something call MCD mast cell disorder and hyper pots. They are very closely linked to the point where hyper pots can actually be a symptom. Nikki has been a patient of Juan''s for a while, she was actually with Morillo to start before Juan took over.
And again back to my research. It took a little convincing to get referrals, not sure how much of a hard time you have had but with us, we have to fight for everything. I digress, we have had an appointment with a mast cell specialist in Toronto St. Michaels hospital. Vapiar or something, I can get you the name if you email me. Anyways, we went to see him and he was pretty convinced she has mast cell. It is brand new material in the medical world so 99.9% of dr's might know the name MCD but nothing about it. There is actually medication for MCD. The dr said she probably has something called Type 3 EDS. (if you can bend your thumb down to your wrist then you likely have EDS) and mast cell and possibly pots but pots is usually a symptom of EDS and mast cell.
So, I don't even know if you will get this or not so I won't keep typing. But if you would like to get in touch with us, it would be great to meet someone else who suffers from this rare form of POTS. I will check your contact info on the blog for an email so I don't have to post my contact info on the public side here.
I look forward to speaking with you and giving you all the info I have found out.
Adam
Hello,
DeleteIt's so great that you are so involved in your girlfriend's health. That is very kind of you. I hadn't heard the numbers on the uniqueness of hyper POTS but I knew it was rare. Is that 1 in 50, 000 cases of POTS?
I am going to the immunologist at St. Michael's Hospital next week to check for MCD and EDS. I asked Dr. Guzman about it on my second visit as on my first visit he recommended that I read as much material as I can. He booked in an appointment with a geneticist and the immunologist. I can easily do the thumb thing and most of the things on the hypermobility list. I figured I might have MCD with the flushing etc. Thanks for the info. I have received your contact info and deleted it as a post. Looking forward to talking with you two.
Rose
Wow, what a post to stumble upon... I am struggling to get physicians to 1) take me seriously and 2) work together to actually diagnose and treat my POTSy symptoms. Its been 6 years since the start of them and reading your post is like coming home in a strange way. What you said about not having to explain yourself? The relief of that in seeing someone who knows exactly what I cope with on a daily basis, is huge. Thanks for writing, I know that takes energy and focus, and for me the light of a screen can trigger my symptoms. One thing I hate about this illness is how isolating it can feel, you mentioned several times how you wish you could hang out with people more... I hear you. I think I'm that second category of patients the doc described, the ones who get worse, then better, then plateau. I have like a relapsing-remitting thing going on, sometimes I'm pretty functional and sometimes I'm completely symptomatic and just screwed. I spent 30 hours in bed this weekend missing out on my partner's family visiting, for example.
ReplyDeleteAnyway, enough about me, just wanted to tell you I appreciate your post and am going to read more of your experience, as I'm wondering how things have gone since you wrote this in 2013.
Much health to you, Alicia
Hey Alicia, Glad to hear I can make you feel not alone. It's so important to have others that just get it. I have posted since 2013, check out my other posts along the way. It's been a rough road but I now have a baby and finished my masters in architecture. I'm not sure what I'm doing now and I'm having difficulty with odsp but I'm trying. Pregnancy was very tough, life is a mess at the moment but I have the most beautiful girl in the world and I think my post natal hormones or mama adrenaline are helping me feel a bit better functionally because I sure need it with this babe.
DeleteI was just diagnosed with POTS yesterday. there is SO much information to try and process.
ReplyDeleteI found it to be a relief and also to be so detrimental to be diagnosed. You get answers but then you have to deal with it. I'm sorry I missed this email way back when you posted it. I'm almost 7 years into my onslaught, so if you have questions still, let me know.
DeleteAdam,
ReplyDeleteThank you so much for all your info. I live in Knoxville, Tennessee and I have just been diagnosed with POTS and Ehlers Danlos Syndrome (EDS Type 3), and am currently waiting on my results for the MCD.
My (Canadian) boyfriend and I are planning to move to Toronto in order to access better healthcare. Your contacts there would be extremely helpful, as we are working to schedule my appointments asap.
Thanks again,
Emily
Hello Emily, Sorry I missed this reply on my blog post. Have you moved to Canada? I wish you the best. There are not a lot of specialists here. Most people go to Hamilton hospital and then are referred onwards from there. Please let me know if you are still looking for any help. All the best, Rose
DeleteThanks for sharing your experience. I was diagnosed with pots last week, 2 years after a fall at work causing whiplash and concussion and post traumatic vision syndrome. Slow recovery and setbacks are very frustrating especially when you are be misdiagnosed and/or receiving the wrong treatment. I saw a Dr. Laura Cruz who thought a referral to Dr. Guzman was in order. Waiting for an appointment. I hear 7-8 month waiting list. I am curious about other doctors who may be able to help in the meantime. I am learning a lot from the dysautonomiainternational website. Great resources. Thinking of you and wishing you a good day, one day at a time.
ReplyDeleteour welcome and I'm sorry to hear at the same time. It's nice to get some answers but tough as well. It's hard to get into specialists but you could see about seeing a neurologist or a cardiologist before hand. They still have waitlists but they might not be as long. Your situation sounds very similar to mine. You could start some treatment before seeing Guzman and then adjust it if need be when you see him. I also find the dysautonomia and pots fb group helpful. I got a blood pressure cuff and when I was low I ate lots of salt and had gatorade or other electrolytes. There are some things that you can do in the meantime but just make sure you ok everything with your family doctor as everyone is different. Best of luck. I wish you a great day too. Also google the "spoon theory" if you haven't heard of it already. It helps with the mental load. :D
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