Gemma

Hello everyone. Anyone taking SSRI or SNRI, can you please advise if it helped you with brain fog and concentration. My POTs symptoms are much less then before, but still experience some bad brain fog and concentration problems, fatigue is much less. Not that much of lightheadness and BP is more stable now. I am curently taking no drugs at all except zyrtec. I am going back to school and this concetration and brain fog problems with interfere with my studying. Its a full time program with 5 classes per semester and I can not take less because of the way the program is constructed. Please let me know if SSRI or maybe SNRI, or something like Amytriptyline helped you with these symptoms. Thanks you all.

Hi all again. Thanks for your input. I read some information on the mastocytosis website and thats where I saw information about people with mast cell having adverse reactions to SSRIs, not sure about SNRI, it just mentions SSRIs. I did react really badly to Lexapro before, had hot flashes, anxiety attacks and chest pains from that medicine. So, there is a chance that I could also react to Paxil or Zolof, if I have MCAS, or it could be a possibility that Lexapro just did not work for me. I cant really ask my physician about it, because he would not know about interaction of SSRI and MCAS. And he doesnt really belive I have it. My hematologist and immunologist just recently started investigating this condition for me, but just had a tryptase levels checked. I brough some literature to my immunologist that Dr. Afrin from SC emailed me, so my immunologist will read it and see if he can perform those tests. Based on symptoms Dr. Afrin says that it looks like I would have MCAS, but need to do testing. He is not excepting new patients now, so gave me soem information to give to my local doctor to try to get me tested here localy. Here is the link of website where I read that SSRI are no good for MCAS. http://www.mastocytosis.ca/treatment.htm I am not sure what we are allowed to post here, but I think this website is legitimate and should be ok.

Hi icelizard. Is Cymbalta ok for MCAS patients? My MCAS is still being investigated. Not sure yet if I have it or not. I did react bad to Lexapro before. Did you react bad to Paxil? I think patients with MCAS can not tolarate SSRIs at all.

Thanks for reply Corina. Did you have very nasty side effects in the beginning? My symptoms are much better then before and i feel like i am recovering, knock on the wood. But i still experience some symptoms, like in the morning some brain blood hypo perfusion, sometimes feeling like my body is swaying side to side when I am sitting straight (weird symptom), still some fatigue but can do much more then before. I can live for now with these symptoms, but afraid that when I start school its going to interfere with my studying. Also, brain fog time from time is another symptom. I am wondering if Paxil can help with this. Also, if I have bad side effects from Paxil, how long should I wait for them to go away. I tried lexapro before I even knew I had POTS, and I had horrible side effects. I took it for 9 days and couldn't go on anymore on this med. Please give any advice possible. Thank you all for your advices.

Hi icelizard. Thank you for advice. I still have a month untill college starts. I do want to try SSRIs. However, my symptoms are much better and i am afraid to put anything in my body that could worsen my condition. Can I ask, so Paxil didnt work for you? Also, does cymbalta start working right away? I heard SSRIs take like almost 4 weeks to start working.

Hello everyone. I wanted to ask how people go thru dental work and what anesthesia is safe to use and also what antibiotics? My gums got inflamed right where I have a crown and I had to do emergency appointment today. I havent seen my dentist in over two years, prior to my POTS, so he has no clue whats going on. He looked at my gums and said he needs to clean it under anesthesia. I said I cannot have the one with epinephrine,and he said no problem I will give you the one without epi. Well I was still so scared that it will aggravate my symptoms, especially now that my hematologist is investigating Mast Cell Activation Syndrome, so I told dentist not to give me any anesthesia and just do it without. It was painfull but I was afraid to do even the one without Epi. I remember I read some posts here that some people got their POTS after dental procedures and that scares me. I feel like my body started slowly healing, and dont want to fall back again. So, after he cleaned my gum he asked if he could put some antibiotic in the whole. Its not injected with a needle, its just around the tooth to kill the bacteria. I allowed him and now afraid that it will rev up my symptoms. Especially I know people with MCAS have to be extra carefull with antibiotics. The one he used was tetracycline, I belive, very small dose and only around the tooth, nothing was injected with needle. Did anyone have experience with this antibiobic? And maybe knows how our body reacts to it. So, now another problem, I scheduled appointment with him for next week for deep cleaning because my gums seem to bleed lately when I floss and I havent done teeth cleaning in like over 2 years. Now this I can not handle without anesthesia. One tooth without anesthesia was enough. So, I really need your advice on anesthesia and also on antibiotics. I think the one he offered without epinephrine was codein, but I might be wrong, i dont really remember. Thank you all!

Was any of you ever on SSRIs while in school and did fine. My classmate was on SSRIs when in my program, she took a year off due to medical reasons and then came back and was on different psych meds and I think she failed out, so I am thinking maybe it interferes with cognitive thinking and causes memory problems. Thats whats listed as side effect. Thanks. And I hope everyone has great holidays this weekend. It is supposed to be a really nice weather on Easter where I live (PA). This brings up my mood .

Hello IceLizard. Thank you so much for information. I have to make sure to bring up incompletes and medical withdrawals and see how they can accomondate that. Usually we do have to lift patients or at least help them get up. But on this first clinical we are doing more observation and just some slight activity. The next clinical is next summer of 2015, and I hope I feel better by then. I am not as bad anymore, so I want to try and see if I am able to continue. The only problem with my program is that I can not do it part time, we do not have such an option. Its already a preset program and everyone in my clas is taking the same classes. In home care i can choose, but honestly I dont know yet how it will work. I never did home care. I did my volunteer hours at outpatient clinic and another one at hospital inpatient rehab. The only good thing about homecare is that I can have my own schedule, so I can work part time and this way have more time to relax. My prime symptom now is fatigue. The POTS symptoms now come in flares. Like I could feel normal for couple of weeks and then start feeling bad again. I am very scared that school stress could flare up my symptoms again. I was even thinking of going on SSRIs while in school, but afraid of memory issues and dont know if it could cause brain fog like xanax did. My doctor insists on Paxil and says it will help, but i am afraid to start it, because think I will have memory problems and thats no good for school. On the other hand if it does help then maybe I will not stress about school as much and be able to minimize my symptoms this way. I wish I could go part time. I think I can do part time, but full time will be tough and I know it.

If I am able to finish school I would also be able to do home care and make my schedule and take as many patients as I can handle, but I just need to go thru school somehow now.

June you mentioned before that you have an education lawyer. Is that the lawyer you hired, or its someone where you work?

I also noticed that if I wake up early morning and have to do something and get out of the house, I feel better, then If I sleep late. Somedays the more I push myself the better. But of course there could be days where I just cant do anything. And those are the days that I need accommodations for clinical work of school.

Ahh, ok. Sorry, I didnt read the signature. My diagnoses is also confusing. Not sure if I definetly have POTS. Doctors say that by the symptoms looks like I do, but two times that I went thru autonomic clinic, once at columbia and once at Vanderbilt are showing negative. My neurologist says people can have POTS and have normal results. This is confusing. I am still going thru the endo testing, because looks like I have some really messed up hormones. My worse symptom is fatigue and hard to stand at times, so I am starting to think maybe it could be chronic fatigue syndrom postviral and not POTS.

Yes I know its really hard. How are you able to go thru the whole day with your symptoms? My symptoms got much better then before, but I am afraid it will still be really hard to go thru clinical. Also, I am afraid that the stress will increase the symptoms again. However, I still really want to go back to school. This is my second degree and I am 32 years old and need to get it finished. My husband is supporting me thru school and I want to finish it and maybe slowly start working. I committed to this school knowing that it will take 3 years in grad school, plus 1.5 years for taking prerequisites. But then I got sick and stayed home for a year and took a leave of absence from school. I got denied for disability, so have no income on my part, plus huge medical bills and also 30000 in school loan debt. And all of this is on my husband. I need to get out of this mess and start either school or work. Thanks all for support. If you could find the information, i would really appreciate it. .

Rachel you are such a good mother. You have done so much research for his condition. I wish him health and soon recovery. Stay strong!

Freaked what degree you are working on? I hope you finish soon, its so bad you only had 2 month left. So, now you retaking the whole semester?

I am in Physical Therapy program, doctors degree. I finished the first year and had to stop due to health. Now I am supposed to go back this May and I am very scary. Its one thing to be able to cook and go to stores again and another thing being able to work with patients all day long. My clinical supposed to start in the middle of July and before that I have a short summer semester. Juneflower if its possible could you please ask your educational lawyer about it. They are fine accommodating me for the classroom part, but when it comes to clinical it is different. I have to be able to meet essential functions of the program, so basically I have to be physically fit for it. I do pass my physical exam, but I will need some accommodations when I have bad days. I wanted to ask them if I can take small breaks to sit or lay down to relieve my symptoms. Also, when I have a really bad flare if I can be excused and not come in. Its so hard because I can have good days where I feel fine and know I can do it, but then a bad day comes and I feel like I am not able to do it. I still have total of 2 years, of which 11 month is clinical education and the rest school work. First year was the hardest so now its supposed to get easier, but I don't know how easier it will be for me. I was thinking of maybe taking another year off, but I don't know if they will allow me to. It does say on website that graduate students can take up to 2 years and if needed may request more, but when I called them they said they not sure about Physical Therapy program because its occupational and I have to check with the department. Ohh, and this is a public school. They receive really good government grands and help for disability students. If you do have a chance please ask him, if I can still be accommodated during clinical. Also if I realize that I still need more time to recover, can they deny my request or they have to give me another year off. In my program we have to take the whole year off, because they program starts only once a year. Thank you. Looneymom (Rachel), my immunologist did test me for mono and it showed that its not active now but that I was exposed to it before. But who knows when I was exposed. Maybe when they did blood work at the hospital when I had an onset of my POTS symptoms, maybe it was not active back them. They just ran a test that shows if I was exposed, but they never ran the test to see if it was active at that time.

Hello everyone. I was wondering if anyone diagnosed with POTS was able to go back to college. I was in a graduate program before getting sick. I still have 2 more years to finish it, actually 1.5 of class work and 1/2 of clinical. I took a medical leave when I got sick for a year and want to try to come back this May. I wonder how others manage their symptoms and college. I am especially worried about brain fog and being able to study. I registered my disability with disability office, but still supposed to meet with program director to discuss my accommodations. When I met with disability representative she said that college can not deny me the accommodations that we came up with. Its basic accommodation like having more time for tests, take breaks from class every 30 minutes, be able to skip more days then allowed if needed. Nothing extraordinary. However, yesterday I received an email from the lady from disability office and she said that they do not want to accomondated me in everything (not sure exactly what) because it will interfere with essential functions of the program. In second summer semester I am supposed to have my first clinical, so maybe they are afraid I will not be able to do it and put in danger patients. But this is why I am recording it so that my clinical instructor and all professors with be aware of my condition. I am starting to worry a lot that they will not accommodate me and will try to push me to leave the program. Can they do it? I have 30000 in loan debt from this program and no job. When I go under college policies it says that grad school students can take 2 years of leave of absence. But when i called them they said that it does apply ti graduate students which I am, but they not sure about occupational programs (mine is Physical Therapy) and that the department will be able to make that decision. I feel like I am being discriminated a little by college stuff. First disability person says that my professors have no right to deny my accommodations, but now she spoke to program director and they decided not to accommodate me in those things. Our program director is not a very pleasant person. And when i got sick she was insisting that I leave the program and then reapply. Why would I want to do it. I already finished first year and already paid them 30000 for that year, now she is asking me to reapply when I feel better and take over all of those classes again and pay again. My anxiety is building up since I saw that email from disability office. I am supposed to meet with program director next week and I am really worried. Does anyone have any suggestions. Thank you very much.

Hi badhbt. Which cake and pizza you get. I am gluten free also.

Ohh, thanks Rachel. I will try to clear it now.

Hi again. I was told that heat helps patients with arthritis pain. Also, costochondritis can be helped by heat. But I never heard that heat can help heart pain. I also out heat on and it helps, so I tell myself its not heart . Lately what I do is wet the towel, put it on my chest and on top I put e heating pad (a rubber one where you put hot water in). It helps more then just electrical heating pad.

Thank you all for replies. If I find out some interesting information from him i will let you know.

Hi everyone. I have a hematologist appointment tomorrow. I went to see infection specialist, but he said to go see hematologist to make sure that there is no underlying cancer or something. I never been to a hematologist. Does anyone have any advise on what I should ask him and what tests I should ask to do. Just a short story of my on set. Had miscarriage in Jan 2012, few presyncope episodes, then Nov 2012 got really sick and was told in hospital its mono, but later found out that the test they ran doesn't show if mono was active at that point, since that november gradually started developing POTS symptoms. Sick until now. Does anyone have any suggestions what I should ask the doctor. Thank you all very much.

Can I ask. Are you sypposed to have fever when you get mono. Before my POTS onset I got really sick. I was so fatigue, my arms and feet felt so heavy and it was so hard to move around. Basicly my main symptom was very bad fatigue, then brain fog, some dizziness. I was told in the hospital that I had mono. However, later on I was told that the test that they did was just to see if I was ever exposed to mono. At the time that I got sick nobody ever ran a test to see if it was active at that time or maybe the blood work in hospital showed that I was exposed before. So, I wonder if one can have mono but no fever. I dont remember having fever at all.

Hi everyone. I also felt horrible after nitro pill. Last time they gave it to me during cardiac ct scan to open up blood vessels. I felt like I am dying. My heart was racing so much. After they took me out from the machine, i couldnt even get up. I was shaking and felt like I just had a siesure. When they asked me questions, i was mumbling, like I just had a brain stroke. Crazy stuff. I was given nitro sublingual once during TTT, but that didnt feel as bad. I also have chest pains for past 7 months. They are always different. Sometimes feels like squizing in certain spots, usually to the right of the sternum. Smetimes feels like stabing pain, or pinching. Its hard to explain to doctor because its always different. Sometimes, I feel pain when I move. I only sleep on my back now, because sleeping on my side gave me more pain. I think I have some musculoskaletal pain and vasospasms as well. Doctors say its costochondritis, but how can it last for that long especially that I had no chest injury. Also, i sometimes feel like my whole chest wall including ribs, sternum and muscles are in pain, espesially feel more pain when breath in heavily. This is definetly scary, but after like 10 visits to ER and long wait and lots of blood work, always told its not my heart. I did try calcium chanel blocker Verapamil for 2 weeks and I though the pain is gone, but then it came back so I stopped Verapamil. I did feel that Verapamil helps with my POTS a little, like lowers HR on standing, so maybe I will take it as needed. I also tried priscription NSADIS Nabumetone. I took it for 2 weeks, then stopped because was afraid for stomach ulcers, but I didnt have pain during the time on the pills, it started going away after like 5 days of taking the pills. My rheumotologist said, its inflamation and if it didnt go away by itself by this time it need to be treated.

I also had mono, that I think onset my POTS symptoms. It was november 2012, right before my finals in grad school. I still went to all classes, and did all school work. I had 6 classes at that time, one of which was gross anatomy with cadaver lab. Too much stress from school, plus mono, just crashed me. Now 1.5 years later I am still very sick and fatigue all the time. I even start to hate my school now, and blame myself that I just didn't stopped it and maybe wouldn't be as sick now. I ended up taking a year off school anyways, but still sick. I also wish I could go back, and just do it differently and just relax and let my body heal.