wibbleway

I just started Tegretol a week ago and having trouble with nausea and headache. Has anyone else had to take this for Trigeminal Neuralgia and experience this. It also seems to make my POTS symptoms worse.

Thank you all for your answers and questions. The doctor had to lower my dosage yesterday. My heart rate was not able to go up and it felt like my heart was going to bust. He cut the dosage way down to see what that would do. I had sweats, heart and head pain so bad yesterday. Today things have not been as bad with the lower dosage so we will see what happens. Like most of you, the doctor is using it to help with fatigue and to try to keep my heart rate level BUT with my heart rate level, the blood can't pump up from my legs easily. Then that causes the pain. Oh well! We keep trying.

Thank you so much for the encouragement. Do you mind me asking why you went off of it?

Cathy

Thank you all for your wonderful insight and help. I will try the sleep doctor to at least see what they say and I will try to find a neurologist that know about POTS. I just need to keep looking for doctors who are able to understanding and willing to learn and leave behind the ones that aren't. Thank you all!

Thank you so much for sharing. My GP had lowered my dose of Syntroid a couple of months ago and when he said to stay on that level yesterday, I was able to go to my Cancer Doctor who had first diagnoised my hypothyroidism and go back today on my higher dose. i am praying that this will help. I do know that fatigue is a big problem with POTS and dysautonomia, it would just be helpful to have someone who understands this disease. I am always grateful to hear others who have the same experiences and symptoms and can understand. Thank you!

Well, once again this disease has caused me so much frustration with doctors. My heart doctor (who has been wonderful) is now at the point where of course there is nothing more we can do for now. Vanderbilt (which I love) is 8 hours away so I can't do anything but email them. But I got so frustrated today with my General Practitioner. I had my thyroid test done because I have hypothyroidism. I told him that my fatigue level the last month has been zilch. I am going through such a slump with my POTS that I am just tired. I could sleep all day and it wouldn't help me with energy. My thyroid medication is OK but I just wanted him to know how tired I was feeling. Well, he wants to refer me to a sleep doctor. I told him "no" that that was not the problem but he really can't help because he doesn't understand POTS at all. I realize that no one can help with my disease (Vanderbilt has tried all the med's and they don't work) but I'd love to have a doctor that could just talk to me about how I am feeling and not just push me off to another doctor. I don't have a neurologist here and wondered if that was the type of doctor I needed. Could anyone please advise me? My dysautonomia is progressing and I just feel frustrated, especially when the fatigue is so overwhelming. Thank you all for letting me vent.

I just logged in and was going to vent and I saw this thread so here goes:

Pots has taken away exercise... I was an exercise instructor now I have to use a walker with a seat.

It has taken away my independency....I can't drive

It has taken away time with friends...we make plans and then a bad day hits and I have to cancel plus I am in bed by 7:30 each night.

It has taken away my fun time with my hubby...we like to dance, travel, etc.

It has taken away my mind...it really can't remember much

It has taken away my running and playing with my grandchildren (I am 57 years old)

One more thing that grips me is hearing people say how good I look and how can I be sick. I push myself to do certain things and don't want to look outside like I feel inside. This disease is hard to explain to others...Hard for them to understand...People aren't aware of it...and you have to explain it constantly.

I could go on and on. This is the 2nd week of a horrible flare-up and I am so frustrated. Rest doesn't help energize me but I have to stay down right now. I get so tired of looking out the window and watching people coming and going but I have to lie here.

But....I try to remember that there are so many others who have it worse. God has blessed me with so much sometimes though you just need to grip. Thank you for the opportunity.

That is the way my pain is too! It is sharp and burning. If I am laying down with my head up, it hurts. I have to lay completely flat or on my side. What is the adrenal support? Thank you all. Maybe someone will be able to give us an answer to this symptom.

My pain seems to start mild and then boom it hits in the middle of my waist in the spine. Then I get the dizzy feeling, the sinking feeling, sweating, chest pain, etc. To me it seems as if the back is also part of the symptoms. I can identify with you and pain from lying around. When I have really though weeks (like this past one), I am in bed or on the couch most of the day and night. It is hard to not hurt from trying to keep your head up, etc. This disease is really so hard to get a grip on. Thank you for answering me and I look forward to hearing from you again.

I have noticed over the last 8 years struggling with this disease that lately when my pressure is low and my heart-rate is up that the small of my back starts to hurt very badly. I have thought about it before but things are getting worse for me and it is so evident now. I was wondering if anyone else has noticed the pain in the back as well? It would help to know if this is normal or something different. Thank you all!

I struggled to clean for 3 years and then finally decided it was worth the money to have someone come in twice a month to do all the hard cleaning. It has been wonderful for me. I hope this helps you out.

Thank you all so much for the advice. I will call my doctors in the morning and discuss this with them and let them know that this has been a bad couple of weeks too. I will keep you informed and so appreciate all of you.

Thank you again,

Caty

I really need some advice, quick. I am scheduled for a routine colonoscopy Wednesday but my system has been so messed up lately with blood pressure problems that I am scared to do the prep. Has anyone else had problems with colonoscopies too!

Cathy

Thank you both. I did call my cardiologist and they told me to drink more than normal and be careful standing. My pressure was 90/70 and dropping fast as my heart rate went up. I need to post a note of my mirror that when I get an infection it makes all the symptoms worse. Thank you for easing my mind. I will watch everything and call them if the pressure gets worse. Thanks again.

Cathy

Hello Everyone,

I know that my doctors told me this but for the life of me, I still get fuzzy on it. I have an upper respiratory infection and my blood pressure is bottoming out. It is so low and my pulse goes so high and my head hurts like crazy. Isn't this normal with POTS and all the other things I have?

Please help out my mental fog.

Cathy

Thank you all for your experiences and helps. I will keep you informed. I am going to the doctor tomorrow and will have him check my thyroid level again.

Cathy

Cathy--have you been checked for a pheo? The pain, "pale" face, nausea, racing heart all are symptoms of one. It wouldn't hurt to double check with a blood or urine test.

What is "pheo"?

Angela,

Thank you! I needed to hear that. It is hard to stay down. I know that when I do then in around 4 days, I can start getting out of the house again slowly. I have just not been doing the right thing. By trying to go out (like you said) it has made things worse. It is just so frustrating to have to cancel things and continue to ask people to step in and do things you are suppose to do. But I will. You helped me realize that I need to lie down and slowly work up to things again.

Thank you for your help!

Cathy

Hello again, everyone. What a horrible two weeks this spell has been. It started with having those horrible heart pains (that is what I call them) from just sitting up. Sometimes the pains are even waking me up at night. I can tell that my pulse is racing and I feel nauseated. Today I was sitting in a Bible study and I told the ladies that my chest was hurting. A nurse looked over and my face was white as a sheet and my neck was red, red, red. She was afraid she might need to come over and give me mouth to mouth. I was so embarrassed. I'd been in bed the last week and just wanted to go out for a hour. Now I am back in bed again. Each time it leaves me tired and with a headache. This spell has been the longest with the most symptoms. The frustrating think is that I know there is absolutely nothing they can do. My heart wall is beginning to harden some from the strain but nothing new can help but rest in bed.

I just needed to vent because it can really get you down sometimes. It is hard to explain and harder to realize that there is nothing anyone can do.

Please let me know if any of you experience the horrible heart pains that come from the fast heart rate and feel like me???

Thank you all so much!

Jana,

Thank you so much. And thank you for everyone's input. This disease has so many facets that it is wonderful to have others to talk things over with.

Cathy

cathy, i have always been very very cold because of pots. when i started mestinon that for me was a BIG help. it didn't cure the pots but it helped tremendously with controlling my bodytemperature. whenever i forget to take the meds i start getting cold again. i used to dress myself as warm as possible and take a hot bath at noon every day followed a a nap. for me that was the only way to stay warm. it is so much easier to just take the mestinon and stay warm!!! when you consider to give it a try, do talk it over with your doc though!

best of luck!

corina

Did you ever take your temperature to see what it was when you were so cold?

Cathy

Sue,

I already have hypothyroidism and on medication for that. It is just so strange that it is happening only when I stand. I normally have the drop in blood pressure,etc., but never have noticed the temperature before like this. Thank you for your help.

Cathy

I'm not sure how cool your environment is, but in the winters here, I have to be so careful not to get too cold or else my body temp also drops and I get almost stiff or at least feel like I can't move my body. I was at a Christmas party last year with my husband's family and I was there for 3 hours (too long for me) and the room was about 65 degrees. When we got home my husband took my temp and it was 94 degrees and my extermities where 67 degrees. Felt like a fish!

I know how you felt. We are in the South and our house is 70 degrees inside. As long as I am laying down and under a quilt my arms and body temperature gets warmer. It is when I stand up that it drops so low and chill bumps break out all over. I've never had it do that before so it worried me.

Hello Again,

I need some advice and help. The past several days, I have been more symptomatic than normal. Today when I stand, I get so cold that I took my temperature and it was 95.5. When I lie down and bundle up, things get warmer with the exception of my feet. But the extreme cold makes me nauseated also. Has anyone else experienced this low of a body temperature and if so why is it happening?

Thank you all!

Cathy