summer

Interesting explanation about EDS and obstructive sleep apnea. I complained to my doctor about this before and he said I did not look like his typical sleep apnea patient! I have not been diagnosed with EDS, but do have characteristics including a high arched palate. Yes, I do think there is a connection between POTS and sleep apnea.

Since starting a combination of BB and Florinef almost a year ago, I have had improvement in a number of ways, although I still have a long way to go. I am able to stay standing for longer periods, I do not get as nauseated, I am not as tachycardic and my episodes are less often. I would say the combination has helped a lot. However, my brain fog has not changed. This is my most disabling symptom and is the thing that is holding me back in getting on with my life. I work as a nurse and can not do my job with out being fully alert all the time. It's very frustrating. I read a study from 1998, from Vanderbilt, called "Raised Cerebral Vascular Resistance in Idiopathic Orthostatic Intolerance: Evidence for Sympathetic Vasoconstriction" It suggests that symptoms of hypoperfusion are caused by constriction of the cerebral vasculature. This includes "altered mentation". I have read in recent posts about constriction of the carotids, but this and other research would seem to suggest it is more than that - that infact, there is perhaps a sympathetic response in the entire vaculature of the brain. When tested by my ANS specialist, he did a transcranial doppler which measured cerebral blood flow velocity. Mine decreased by close to 30% with upright position. According to the study I mentioned, normal controls dropped only 10%. Here is my question. BB are known to cause vasoconstriction and according to my doc have worsened Raynaud's syndrome for me. Does anyone know if BB can have vasoconstrictive effects on the brain as well? Could BB make brain fog worse? I know this is an old study and maybe some of you have more up to date info on cerebral vasoconstriction in POTS. I would love to know about it if you do. Thanks, Summer

Hi Linda Joy, I had a bad reaction to a SNRI, so will not be trying another one any time soon. I know I hear others say that trying a few different ones is a good idea until you find one that is right for you. I'm sure that is true for most. I have not yet gotten up the courage to try another one, and I'm not sure I ever will. Summer

Hi Gary, Sorry you are going through so much difficulty. The kind of anxiety you are describing sounds torturous. I agree with Julie that you need to be careful about self-medicating and adding supplements - especially about adding or taking things away too quickly. You can end up in a situation where you don't know what's helping, or what is making things worse. I agree that you need to continue to seek out a compassionate doc who will persevere with you and work on a plan that treats your physiologic condition. Living with chronic illness is so stressful. Even though your illness is physiological, this does not mean you will not experience psychological fallout. Many of us do. Have you considered talking to a good counselor or psychotheripist who could help you learn good coping stratagies for the anxiety? This REALLY can help even though the anxiety may be a symptom of your condition, and caused by an ANS that is out of whack. I agree that you can not always just "relax" away the kind of anxiety you are talking about, but there are real cognitive strategies that can help. Please do not misunderstand me. I am not suggesting that a counselor the solution to your problems. You need a good doctor to treat you physical condition, but in the meantime, a good counselor might help to get you through this really difficult and stressful time. You might find this more helpful than having more meds thrown at you. Gary, I truely hope you will have a better day today, and many more to come. Take good care. Summer

Thanks for the replies. Yes, I'm not sure... maybe it's just POTS... The thing that made me wonder more recently is that I was taking Zantac for acid reflux, but about a week ago I switched to a Proton Pump Inhibitor, and since coming off Zantac, I have had several flushing episodes, which is more than my usual. I have not had an increase in my other symptoms, though. I would say that my flushing can be related to stressful events like appts, but it does not neccessarily happen during, but more often after - sometimes lasting for a couple of hours. I would not say I have anxiety with it either. It just seems to happen if I've been "pumped up" for some reason - like an appointment, Christmas dinner, housework... Does this sound familiar to anyone?

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? No 2. Have you ever been diagnosed with EDS or suspect that you may have it? No diagnosis, I do have quite a few characteristics 3. Do you experience symptoms when lying down even after a night of sleep in your bed? No 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? Yes 5. Have you ever been informed by a doctor that you have low blood volume? No 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Yes+++ 8. Did your POTS arrive suddenly? Had mild POTS for years but dramatically worsened after a viral infection 9. Is your skin pale? Yes 10. Please the top 6 worst symptoms that you experience with POTS: Brain fog Fatigue Muscle and joint pain Migraines Heat and cold intolerance Visual symptoms (ie. blurring, floaters)

Hi Gary, I often get a stiff neck or shoulder pain along with, or just before a migraine. I also have cognitive fog which is always at it's worst right before I have a migraine. I'm sure mine is all POTS related. Summer

Hi! I have trouble with this too. I was not able to tolerate salt tablets. I add salt to my V-8 juice. A quarter of a teaspoon of table salt adds about 500 mg of sodium. I've gotten to really like it this way and it actually tastes pretty bland now without it. Hope this helps! Summer

Some things I have read here have me wondering about MCAD. I have been diagnosed with POTS, and it seems to be the hyperadrenergic type. For a long time I have had occassional flushing, especially in the evenings. I used to often get it while working the evening shift, especially if it was very busy at work. People used to comment on it. My ears and cheeks would feel like they were burning. I had no idea why this would happen while I was working, but knew it did not seem to happen to others. Does this sound like the flushing that might happen with MCAD? It does not happen every day - perhaps two or three times a month. Thanks, Summer

I guess Dr. Fischer is talking about teenagers because he is a pediatrician. If what I read is correct, many teenagers will outgrow POTS so it's hard to know if the improvement he is seeing is because of the BB, or just natural improvement that is expected for most teens anyway. I guess the prognosis is not as good for us "old folks". I do feel better with a BB than without, but it's no cure that's for sure!! I have to take Florinef with it to keep my BP from going too low.

Hi Melissa, I can really relate to what you're talking about. Up until a few months ago, I was having a hard time figuring out what to do with all my new "down time". I just did not have the stamina to do the activities that I filled my free time with over the past number of years. I tried a few activities that were new to me but nothing really clicked. I decided to think back to the things I had really loved to do, even since I was a kid. I always loved music and played a number of instuments when I was younger. I had not played piano for many years, but decided I would try to re-teach myself. I have really been enjoying it and find it is a real escape sometimes from the "not so great" times we all have. I'm catching up a bit now and am quite proud of myself! I'm considering trying a new instrument - I'd love to try the flute, but I'm sure I would pass out cold. It takes more wind than I have now! Perhaps I'll try guitar. Take care! Summer

Hi Thankful! Opps. I plead "brainfog"! Sorry, I should have thought of that. I've changed the link to the abstract. But you're right, you pretty much get the idea from the response by Dr. Blitshteyn. Thanks for letting me know. Summer

I know that the topic of anxiety and POTS has come up several times lately. Apparently there is a recent study from Vanderbilt published in the March 2009 issue of the "Journal of Neurology, Neurosurgery and Psychiatry" that has looked at this issue. Here is a link to the abstract: http://jnnp.bmj.com/cgi/content/abstract/80/3/339 Also, here is an interesting response to the study by Dr. Svetlana Blitshteyn. I think she does a great job of explaining anxiety as a symptom of POTS: http://jnnp.bmj.com/cgi/eletters/80/3/339 Just thought some of you might be interested. Summer

Interesting. Usually I feel terrible for about the first hour after I get up and my BP is often in the 70's -80's systolic. After I have some coffee, my meds and salt/fluids, I feel much better and the rest of my morning is the best part of my day. I go down hill from noon time on. Like Dani, I then crash around 3 until 8pm or so. Unfortunately, this is the time my kids come home from school and there is homework, supper, after school activities etc. I wish I could have that "early day" energy when I need it most - in the late afternoon. It's interesting to me that after I can't go any longer and I HAVE to lie down, I actually feel a bit better later in the evening after being flat out for several hours. I guess this shouldn't surprise me, but it still is hard to believe that this is all due to being upright!

Hi Ann, I also can feel terrible when my heart rate is normal. In fact, sometimes I feel worse after a tachycardic episode is over. I find sometimes I can push through the tachycardia (if it's not too high - like over 140), but then I feel really exhausted when it is over, even though my heart rate may have come down. I've learned that even though I can push through it, it's not usually a good idea. I find, because the BB keeps my HR lower, it improves my standing tolerance and decreases the palpitations, which is a BIG help. However, I do not find it helps much with the general fatigue or brain fog. It does help avoid some of the post-tachycardia exhaustion I experience because it keeps my HR lower. Hope that all makes sense. Summer

One of the first symptoms that increases during exercise for me is brain fog. I had been doing about 15 minutes of slow walking on a tread mill, and by the time I finished doing that, I had difficulty counting my 10 reps of light weight resistance ( I would always loose track and didn't know how many I had done). Talk about feeling stupid! This is the first negative effect I feel. That is followed by the usual fatigue and wiped out feeling.

Hi Everyone, Thanks for responding to the poll. I find it really interesting how young most of us were when we first experienced symptoms. Now I'm wondering if others experienced symptoms when they were young, had improvement for a number of years (like a decade or two) and then had symptoms return years later. Mary P - I've sent you a message. Hope everything goes well in June. Brianala - Yes, I'm sure being "stressed out" has been a common misdiagnosis for most of us! Glad you eventually got some real answers. Jump - Wow! She actually wrote "orthostatic intolerance" and then did not persue it? I think even our "good" doctors get into a rut of diagnosing the same things over and over - like the 25 most common things - and after a while they just don't consider things that they don't usually see. Glad she finally referred you. It is a relatively un-talked-about disorder. Does anyone know if med student learn about it at all in school?

Hi Liz, I don't know the answer to your question, but it's a very interesting one and I hope someone else here on the forum may have some insite. Just wanted you to know that I'm glad you are ok and sorry that you went through what must have been a very frightening experience. It's a very interesting question because so many people with POTS seem to have issues with both vasodilation and vasoconstriction. I do wonder if there is a connection. How did your GP make the diagnosis of small vessel ischemia? Could this be seen on CT scan or another test you had while in hospital? Take care, Summer

I also have been diagnosed with Raynaud's this winter. My doctor considered taking me off my beta blocker as he wondered if starting the BB over this past year may have worsened or triggered the Raynaud's. We talked about it and I feel I can live with the Raynaud's (it's more of a nusance than anything), but I'm not sure I can live without the BB! It has really helped me. For now I'm just trying to keep my hands from getting cold (not easy here in Canada!). Summer

Just wondering at what age we each received our diagnosis as well as how old we were at the onset of symptoms.

I agree 100%. This is the best resource I have found on dysautonomia. It has also been a great resource for my family doctor. The chapters are short and to the point, but contain excellent information. He was happy to read over some of the relevant chapters and I did not feel like I was asking him to read pages and pages. It was expensive, but worth it for me. I ordered it at Indigo. Summer

I experience this too. I have always wondered if it is the fluorescent lights because it also happens to me in other places with this kind of lighting. I do not feel anxious when it happens. Summer

I have to be careful how I take in salt too. I can't drink salt water or take salt tablets. They do have an emetic effect on me. I can tolerate lots of salt in my food though, so I make sure I get it that way.

Thanks! Yes, I guess I should see an allergist and try to get some of this sorted out. I'm getting so sick of doctor's appointments. I've had more doctor visits in the past two years than I have had in my entire lifetime, prior to all this.

I have a question about this. I have had POTS symptoms for a couple of years now and am beginning to question whether or not I have some new allergies that I have not figured out. I also get random hives that I can not explain. I'm wondering about the Zantac. I always thought it was used for heart burn. Is it also used for allergies? I have a perscription for it that I only take occassionally for heart burn. If I took it more often would it help with these annoying little itchy hives? Summer