Kimba

I am also on Pamelor for Migraines. I took it for about 3 weeks and it seemed to be helping with the migraine symptoms (head fog, head ache, nausea, etc). I started to get some wierd heart related symptoms so stopped and saw an electrophysiologist about all that. He said my heart was fine and I could start the pamelor again. I just started this week, but am hoping it will help - especially with the head fog. My POTS Dr. said she sees improvment in my POTs based on BP and heart rate, etc, so actually thinks my remaining 24/7 head fog is not due to POTS. She encouraged me to keep working with the migraine Dr., who says he has prescribed Pamelor for years and has found it to have few side efffects and work well for migrianes. He said my migraines are a "tranformed migriaine" - which means they are chronic and daily and part migriane part stress. By the way...Pamelor is an anti-depressent that helps regualte the chemicals in your brian. It is an older anti-depressant (not newer like Prozac), and can have more side effects than the newer med's, but my neurologist really likes the results he sees with it for migraines.

I just saw my POTS Dr. She said based on my heart rate, BP, syptoms, etc the reamaning brain fog I am experiencing is likely not due to POTS. (My fog has been 24/7 for 6 months since I first got sick.) I asked her about tests for brain circulation, etc and she suggested I cotinue to work with the headache specialist (neurologist) I am seeing for a wierd version of migraine that does not usually give me a pounding headache, but just a lot of other related symptoms. I am trying to get with him for next steps on this. If you have any migraine symptoms, think about maybe focusing on resolving those too. I understand how awful it is to feel like you are living on another planet all the time, so if you find something that works please let us all know.

I just saw my POTS Dr. last week (She is very knowledgeable and good.) I like to travel to asked her about flying. She told me that flying itself was not what was bad, it is all the stress surrounding travel in general. (Little sleep, hectic schedules, carrying heavy bags, rushing through airports, etc.) She indicated that as plane cabins are pressurized, that they themself pose no risk. She suggested to be smart regrading layovers, flight times, checking baggage vs carry on, etc - those would be the things to pay attention to. Good luck...I would leave myself some "down time" immediately upon arrival if possible so you can have some time to recover if necessary.

I never see anyone mention Pedialyte here...which is high in both sodium and potassium. Product info is listed in mEq's instead of milligrams, but I found an online calculator to figure that out. Based on that Pedialyte has about 1050mg sodium and about 720mg potassium (if I am remembering that correctly). It is expensive, but generic versions are much cheaper. My POTS Dr. said I could drink this instead of Gatorade as it is less sugary and has fewer calories.

Hi Holly, I am new here too. I got sick in March and was diagnosed in June. One Neurologist's PA told me to do everything with lifestyle, meds, etc but not to look for ANY indications of improvement for at least a month. She said most likely I would just look back one day and realize I was better then I was before. I think this it turning out to be the case. I am not "cured", but am making progress. It has been helpful to arm myself with knowledge so that I can have conversations with my Dr's. I am being vigilent about understanding this and trying to figure out what is going on, and I think that is helping my recovery. I am learning that previously undiagnosed migraines seem to be really impacting my head fog, nausea, etc as well. So I am hopeful treating those will help. I am less discouraged than I was before, and think I will continue to improve. I have found that a lot of the literature is very "doom and gloom", but that then there will be stats buried in there like the "85% - 90% get better" thing you quoted. At the Cleveland Clinic office I go to for POTS (so they see a lot of folks come through there with it), some nurses indicated that they see about 1/3 of their patients get better and have few / no problems later. Another 1/3 seem to be able manage it OK, and the rest have more difficulty. I think you can work for and hope for the best, as it seems people can recover and have their lives minimally impacted by this as time goes by...some fully recover too! I have also found that keeping a daily symptom log is useful - it helps with Dr.s appointments and it helps me track improvements, when they started, how far I have progressed, etc. Good luck...

Thanks for the reply Amber. I guess I am just confused by this sleep thing, as I pretty much go to sleep immediately each night no matter what time I get in bed, sleep pretty good all night, but then suddenly wake around 6am with this rushing feeling when I try to nod back off. It seems to happen everyday like clock work! I would guess a racing heart and adrenaline rush, but this morning it never got above 78 bpm while this was happening. I am sure of this reading, becasue I was using an Heart Event Monitor from the Cleveland Clinic. When I called the event in, the technician told be what my min/max heart rate were. I suppose it could be the Toprol XL wearing off, but I thought most people only got tachy when standing, etc...not sound asleep in bed. Am I wrong there? And, I thought your heart rate had to be higher than that to be considered tachy. When I initially woke at 4:30 am (a little earlier than usual this morning) it went from 47 to 68 over about a minute and a half, but that still does not seem like a crazy number to me. Especially because I was just waking up from a night of sleep, and when I woke I could feel my heart pounding a bit so I pushed the record button on the monitor. I am sure waking this way increases anxiety, so would likely add to your heart beating faster anway. A related question about being able to feel your heart beating hard frequently - One Dr. hypothesized that an immune modulating drug may have casued my own system to damaged my nerves and bring on POTS. If that were the case, do you suppose that all this hard heart beating I feel often when my overall rate seems pretty normal could be due to some sort of nerve damage? I ask, because I know when you have even a small burn you can feel your heart beating in the damaged area. Might be the same case here? I seem to often feel it beating in other areas too (face, neck, arms, etc). If anyone can help clarify specifically any of the questions in bold above, I would greatly appreciate it! Thanks - Kim

I have searched the forum, but can't find anyone with sleep disturbances like mine. I have been waking every morning about 6am, unable to go back to sleep. I was waking "wired" (I think due to a new medication, as this has subsided since stopping the meds), but now it has switched to a "rushing" feeling that wakes me up every time I start to relax and fall back to sleep. I thougt this all might have been due to my heart rate increasing and waking me up , as I could feel it pounding in my chest. This pounding has also decreased a lot, but I am still waking up. Wierd thing is - monitoring my heart shows that it is not going crazy. Sometimes this "rushing" feeling happens even as I try to fall asleep with my heart rate in the 50's. I would call it an adrenaline rush, but doesn't your heart rate always increase with that? The longer I am off the medicine that I think was aggrevating all this, the better I am sleeping. But I still wake about 6am every day, heart pounding less noticeably all the time, heart rate pretty normal, but with this "rushing" sensation throughout my head (and often chest and arms) that wakes me up. This can go on for hours until I give up and get out of bed. Months ago when I first got POTS and was really sick I called this "waking on a roller coaster", as it felt just like you do when you drop down that first big hill on a coaster. ("Great" way to wake!) This new feeling is not that pronounced, but similar I suppose. - Anyone had that roller coaster thing happen like I did a few months ago? - Anyone had this "rushing" feeling upon waking each morning - no matter what time you went to bed, and after sleeping good all night? I recently switched to Toprol XL, so maybe that will help, but I as my heart is not racing and everything else seems fine when this happens, I am wondering if this even will help? Thanks - Kim

I have been learning a lot about migraines lately, and have been reading that they can cause dizziness, head fog, etc. I am seeing a headache apecialist at Cleveland Clininc that hopes by treating my migraines my head fog can be decreased. My POTS Dr. thinks this may help as well. At my last POTS check up she indicated that my BP, heart rate etc seem to be better, and that at this point she is doubtful that my remaining 24/7 head fog is due to POTS. She encouraged me to keep working with the headache Dr. on this symptom. I am also learning that migraines come in many forms, and not always with the traditional head pain you normally associate with them. Mine are usually just a constant level of pressure behind the eyes, sometimes pain in the same area, and symptoms mistakenly diagnosed as sinus problems for years.

Since you all know so much about POTS, I am hoping someone will have some info about this. Sorry for the lenth of this, but here goes... I started to get sick last March (mainly foggy/some dizzy). I have MS so they immediately assumed it was a flare up, even though I have been extremely fortunate with the condition so far. My local Neurologist prescribed a 3 day couse of Solu-medrol, which is a corto-steroid commonly used to manage MS flare ups. It is adminstered by IV. I had it once before 7 years ago, and handled it fine. It caused me to be very "wired" and have a racing heart while on it, but that is the most common side effect for everyone. The difference this time was that the treatment was followed by oral Prednisone to taper me off the effects of the other drug. This is the first time I have taken Prednisone, and 8 hours after the first dose I was violently ill for 36 hours and ended up in ER. Before the Prednisone I was only foggy, and slightly dizzy at times. I did not notice the symptoms increasing when standing, moving, etc - they always seemed constant. After the Prednisone all the other more typical POTS symptoms started - heart racing, nausea, etc. I was passed around among local Dr's that were baffled, and ended up at the Mellen Center for MS Research at the Cleveland Clinic, as we were all beginning to doubt it was an MS flare up at all. The Dr I saw there said she was sure it was POTS, and not MS. She is also sure I have been suffering from undiagnosed migraines (probably since childhood) that have been mistaken for sinus problems. She said because I felt completely cured while having the steriod IV treatmetns (almost ALL head fog, etc was gone), that I could have been suffering a severe migraine attack without the traditional "headache", but all the visual/perceptual/foggy feelings that can accompany them. Apparently corto-steroids are used to treat severe migraine attacks as they chase the symptoms away. These treatments really have no immediate effect on an MS flare, but help in the long run. That is why she deduced it was a migraine and not MS. Finally - my question... Have you ever heard of anyone having a severe allergic reaction or anything to Prednisone that caused POTS? A Dr. I spoke to at the Case Western Autonomic Lab said that as the drugs I took were immune modulators, that they could have caused my immune system to attack my own nerves, bringing on an acute case of POTS. He also said if this were the cause, that it would be just like a virus casuing the POTS onset. Just wondering, as I am going to see Dr. Fouad at the Cleveland Clinic next week again, and want to talk to her about this. Thanks - Kim

Have heard the same observations from the nurse's at my Dr's office - Cleveland Clinic. I am still new to this POTS thing too (diagnosed June 06), but by sticking to all the diet, lifestyle and medicines prescribed, I think I am beginnig to see some positive changes. I am able to think more clearly recently and feel less brain fog - although it is still definitely there all the time. I too am shooting for the 1/3 that can get past this with no real lingering effects. Good luck!

Brain fog is a big problem for me too, so if anyone gets any answers about how this test can help, please share. I read the article, but it more info would be helpful. Thanks - Kim

Just diagnosed with POTS after my local Neurologist was blaming my 24/7 brain fog on my MS. I am now on Lopressor, wearing support hose (knee high), and increasing salt, potassium and fluids. I have also worked out an at home strength and cardio program with the help of a local rehab center. I am very committed to doing all I can to get better, but have only just started so have seen no big results yet...except that the nausea is a bit better the past few days. My symptoms are: Brain fog 24/7 for the past almost 4 months, nausea that started after a course of steroid treatments for the incorrectly diagnosed MS flare up, and headaches. I was diagnosed at the Cleveland Clinic. They have also started me on Topomax as they feel my headaches are undiagnosed migraines (have had them for years). They also found a hiatal hernia through this diagnosis process, so maybe that is contributing to the nausea (?) Either way I am currently taking Nexium for that, and the decreased nausea seems to have coincided with that. Bottom line, all three symptoms or only the fogginess may be due to POTS. However, my tests have shown that it is venous pooling that is causing the domino effect in my body, and that my blood volume and heart function are fine. I have never fainted or really even felt light headed...it is always more just this 24/7 foggy feeling or the feeling you get when having trouble perceiving the world while experiencing a migraine headache. I was diagnosed with MS in April 1999, and this would have been my first real flare up...so I have been really lucky and pretty symptom free to date with that (knock on wood!). The posts on this discussion group are helpful but I am looking for some success stories from those that have had similar symptoms to mine. And any helpful tips for getting back on track and leading a more normal life. Anyone ever use oxygen in the evenings at home to "feed their brain" and get some temporary relief from brain fog? If so, do any effects last into the next day? I am overweight and not fit, but able to get around and function on most days even after this four months of illness and inactivity. Anyone seen great improvements through disciplined lifestyle, diet and fitness changes? Any input on what I might expect as far as recovery time if I am fully committed to all the recommendations of my Dr.'s, who are very knowledgeable about POTS? By this I mean how long before I can hope to see some improvement in the symptoms I mentioned and start to feel more normal again? One Dr. in Cleveland told me to not look for any big changes for at least a month. Sound about right to anyone that has had similar experiences to mine? Thanks -