Jersey Girl

It sounds like you are retaining fluid for some reason. You should be checked by your physician and at least have your BP checked.

Dear Beverly, I am so sorry that Nicole has been having such a difficult time recently to put it mildly. Yes, I definitely get worse premenstrually (up to 4-5 days ahead of time-each day progressively worse until I do get my period) and I also get worse middle of the month with ovulation. I had irregular periods and heavy bleeding when I first became ill with POTS 2 1/2 years ago. I had my period for 2 weeks very heavy then off 2 weeks then on 2 weeks and off 2 weeks and on 2 weeks. I ended up getting a D & C and told that my symptoms were related to perimenopause. I was prescribed Alesse ( a birth control pill for older woman) one month and almost had a stroke I had such a bad reaction to it. The next month I was given Prometrium, a progesterone only pill and ended up hospitalized for the duration of m period ( nobody knew I had acute POTS at the time). The next month I was give Lupron to suppress my period as my son was getting married when I would be expecting my period. I took 3 injections 28 days apart for a total of 3 injections and I didn't get my period for 6 months. I was told that it would put me into menopause but no such luck. When my cycles started up again it seemed like I had a horrible relapse like when I was first ill. I continued to have regular heavy periods which always made my symptoms worse and sent me to bed, but last month I didn't stop bleeding and needed a D & C which was somewhat scary, but I did fine. If I get nonstop bleeding again, I will probably opt for a vaginal hysterectomy if I have to go under general anaesthesia again. The heavy bleeding just contributes to hypovolemia and the hormonal fluctuations totally destabilize me. I did become anemic last month and took iron pills which made me feel a little stronger. There is some controversy with Lupron injections and how many one should have before one is at higher risk for certain kinds of cancer. It might help initially but I fear that she may relapse just as bad as I did when my cycles resumed. One of my daughters(24yo)tried Seasonale because she has heavy periods but couldn't tolerate it for even a month . She went back to Jasmine ( a different type of BCP) which seems to give her less side effects. She was told by the gyn doc that in certain instances she could just take the Jasmine back to back without getting a period and not to worry. It could be that Nicole may need to try a different BCP to control these symptoms. I wish I could wish these issues away but it seems like it's a definite contributor to worsening of symptoms. Take care. Martha

Tearose, I have been away from my computer the last 2 days but I wanted to tell you that I have a weekly 1 hour class in Yoga in my community, but I also purchased a tape at Barnes and Noble called "AM and PM Yoga for Beginners" by Gaiam with Rodney Lee and Patricia Walden that I try to do in between classes. I also bought a yoga strap and yoga blocks because I am not too flexible. It is a good tape for beginners. I have been going the last 3 weeks for neuromuscular massage therapy mainly focusing on my left leg and hip and left shoulder and have found that I have more strength and control of these muscles afterwards. My muscles were so tight that it was rotating my left hip forward. I went this morning and I feel so much better afterwards. ETOLY, thanks for posting the article from Hopkins. It is one of the most informative that I have read. I think that Dr Khurana may have closed his practice to new patients. I wish John Hopkin U. Hospital had a similar program for adults. Opus, I am throwing our my canola oil after reading about its industrail uses. thanks for sharing. Take care, Martha

Stacey, I'm so sorry that you have had this for so long. You are very fortunate to have such a wonderful husband. And we are all very fortunate to have this site to share our comomon issues and help each other the best we can. What did we all do before the Internet? I know that I have had to drastically change my daily activities from what I did before becoming ill. I have had to make extra efforts to maintain some friendships because everyone is so busy it seems these days. And those days when I feel worse, I feel really bad for myself. So I have to pick myself up, not fret about it, and tell myself that this too shall pass. Herdswoman has the right attitude. Hope this finds you feeling a little more at peace. Martha

Hi Beth! I had a holter monitor a year ago and it showed a high number of PVC's but was interpreted as being "normal" for my age. The cardiologists again did not know I had POTS even when I flunked the first tilt table test I was given by them. I don't go to them anymore. I also get extremely out of breath climbing the stairs as well. I think the holter monitor is useful to rule out other causes of your symptoms. Hope your test results are ok. Martha

Dear Tearose, I also have muscle weakness on my left side and some muscle atrophy that has developed over the last 2 1/2 years when I acutely came down with what I now know was POTS. I had 3 MRI's over the first year because many physicians felt I had MS or had had a stroke, neither of which showed up. I also had evoked response potentials of my muscles and an attempted EMG of my left arm after the evoked potential was not completely normal on that one limb (it was too painful.). I have done leg strengtening exercises and more recently gentle Yoga which has helped as much as anything. My left leg is somewhat numb and I have been going to a massage therapist which helps somewhat. My left calf is also where I expereince the greatest amount of "autonomic swelling." Siitng in a chair will make the leg go completely numb. An acupuncturist told me that my left gallbladder channel was blocked. I don't have any scientific explanations other than nerve damage at this point. I wish I could help with better explanation or cure so I am sending my hopes and prayers to you. I agree not to overdo the exercise but also not to let oneself become deconditioned. Martha

Opus, I also added magnesium to my diet in the form of potassium magnesium aspartate (250 mg) and I get mine at a GNC store. I read somewhere where it may be better absorbed if it is in this form. I also believe that it has helped with my level of fatigue, but it might also account for the fact that I have improved in the emotional sensitivity area as well. When you feel so crappy it is very easy to overreact to things. POTS is also socially limiting because you never know how you'll feel at any given moment. Having a chronic illness is the pits, but one must look for the silver lining in the cloud. I must remind myself of this fact daily. Martha

Welcome Kate, I just turned on my computer after few days and saw your posts. It does sound like you are on a lot of medication. I think I have chemical hypersensitivity so I try to get by on the least amount of medication possible. I did find the Neurontin extremely helpful initially for all the headaches and muscle aches and pains. I used to take 400mg four times a day. Zoloft made my blood pressure fluctuate even more than it would have otherwise. A very small dose of Xanax was the only medication that worked to help with the tachycardia. Beta blockers were the worst for me. Getting extra rest throughout the day and at night has helped as much with my mental fogginess than anything. Exercises to strengthen my leg muscles, extra fluids ( I drink Propel all the time because it has less sugar than Gatorade and I am carbohydrate sensitive), and pacing myself throughout the day has helped alot too. Nothing seems to relieve all my symptoms which is frustrating. Don't stop any of your medications without talking to your doctor--many need to be tapered so you don't have a worse problem. I am still very emotionally sensitive too but I have seen some improvement in that area as well over time. You seem to be so mature. I know I wasn't at your age. Hope you continue to improve over time. Martha

How excited you must be expecting your second child! I am so happy for you. I tried acupuncture this past Winter and Spring (somewhat sporadicaly though)and think that it did calm down my nervous system. It supposedly boosts your natural immunity and by gum I didn't get any colds then. The only thing about it I found(besides not being covered by insurance) is that it's effects on my nervous system were very temporary. I would leave feeling good (maybe because I was lying down--I always feel good when I lie down) but by the next day I was back to my old self. I have found just as much relief from neuromuscular massage therapy which uses some acupressure techniques and found it more relaxing. So that's my 2 cents worth--everyone is different. I hope you feel better after your first trimester. I always felt great being pregnant from around 4-8 months.

Dear Kathleen, I am happy to hear that your surgery went well. I have old compression fractures of my L1 and L2 from a back injury 35 years ago and wonder if it is related to my POTS now. Is there any relationship that you know of between your dysautonomia and back condition? I also had recent minor surgery and surprised myself how well I coped. Hope that you continue to improve. Martha

You must appeal. I have been denied twice now and just found a lawyer in August to handle my next appeal to the administrative law judge. The attorney told me it most likely would be 10 months from this past August. I don't think social security has any idea how this condition impacts one's life. Take care. Martha

The angels have just the right feel to them. I can't wait to buy a bunch. What a great idea! Martha

Dear Ernie, I don't know what to write because I feel the same way sometimes and don't feel like letting anyone else know because I don't think they'll understand. I have to push those feelings to the back of my mind to get through the day. I am so thankful that you posted because I feel less alone dealing with this crazy POTS. I know that I have read your posts frequently and that you have responded in the past to me and many others. Sometimes it's ok to cry too because it lets out those pent up emotions that just make the dysautonomia worse. I truly believe that you will have some good days ahead. We all have many things to be grateful for in spite of our "condition." Martha

Welcome and I'm so sorry that your daughter is feeling so bad presently. I tried many remedies for the stomach issues. For me the best help when I was more acutely ill and even now is a fews cups of 100% ginger root tea which I order from tripleleaf-tea.com. Many groceries and health food store carry it also. The one I prefer is in the orange box. I also need to watch my diet even more closely than I ever did to avoid simple carbohydrates. I do better eating small amounts at any given time and sticking with high protein and complex carbohydrates for meals. Sometimes just getting up and walking at an easy pace even when I don't feel well will help me. Let us know how your daughter feels. Martha

Dear Nicole and Beverly, I have been reading these posts since yesterday and it reminds me of how I was 2 1/2 years ago. I stayed in bed as much all the time because of the severe headaches and dizziness and weakness and muscle pain and spasms. Looking back the only medication to help at that time was Neurontin (400 mg four times a day). I was yet to be diagnosed with POTS. Talk about role reversal, I had to have my then 21 and 22 year old daughters take turns staying at home with me to take over because I also had my first grader at home who needed care and I needed so much care myself. My daughters were such good coaches and would hold me up while I would attempt to walk down the driveway. Eventually (6 months later) I was able to do a gentle 20 minute ball tape with my daughter by my side (most of the exercises were in a supine position with the ball) , not the way she did, but at my own level of comfort. These exercises I believe helped strenghten my legs because it is SO easy to become deconditioned lying in bed for any length of time. I was eventually able to lower the dose of neurontin over the course of a year. I did have a "crash" after 10 months and went back to more bedrest for another 2 months. I really think the change in the weather to more cold has also set me back recently. I feel like the "old lady" (52y) on this site where most are a lot younger. My recent D & C has also exhausted me. I was told to take it easy for just one day after but I know it will take me at least all week to recover from this setback. I spent a fortune on waist high compression hose with limited benefits. Since most of the pooling occurs in one's lower legs I have resorted to heavy compression knee highs. It is also possible to put on two pairs of regular support hose. I also do leg strenghtening exercises 3 times a week. One must start very slowly after these setbacks and keep a positive outlook in spite of extremely slow progress. My husband's cousin's daughter had my exact symptoms her junior and senior year of high school. (never had a tilt table test or diagnosis) The only residual she has now at 29 is a little imbalance diving headfirst into a pool.(which she avoids) She is married and her baby is a year old. Her mother was also by her side continually during those 2 years. I know how hard it is for your family. I pray that Nicole will come through all this soon. martha

I just had D & C this past Friday under general anaesthesia and did very well, much to my surprise. The anticipation was worse than having it done. I had lost so much blood and was anemic and had low red blood cell count (just what we hypovolemics don't need), so had started on iron supplementation which my stomach couldn't tolerate ( no surprise there). My sister who had lung surgery over 2 years ago was told to snack on Total cereal dry to build up her iron level as she was donating blood for herself prior to surgery. It seems to be helping in general and is so much healthier than alot of things I have previously snacked on to increase my sodium level.

I also have had dry eyes as well,even before developing POTS, I stopped wearing my contact lenses because of the problem (could only tolerate them about 3 hours). It just got worse with the POTS. My mouth has also been somewhat dry in spite of drinking over 64 ounces of fluids a day ( I usually drink 46 ou. before lunch). I have been to the dentist for a crown and a cap since develping POTS (no coincidence I believe). I have had two full normal eye exams over the last 2 years. No one has ever mentioned any relationship to a disease.

Hi rqt, I also react to cold tempertures. I get dizzy even walking in the dairy and frozen food aisle of the grocery store. I get through those areas speedily if at all. I also dread the cold weather here in northwest NJ. We had our first frost the other night. I always feel worse when the temperature changes.

I could not tolerate the Florinef at all. My blood pressure was crazy high and unstable. I am a "volume depleter" also and must drink lots of fluids during the day. I found that drinking 16 ounces of Propel when I first wake up (some people drink fluids before getting out of bed) does help a lot. I know that I usaully drink 48 ounces combined fluids BEFORE lunch. I am also taking a low dose of neurontin (100 mg 1-3 times a day) and I don't know why but is seems to stabilize me ever so slightly. I never tried the Klonipen but I know it is prescribed frequently. They are both anti-seizure drugs so may have similar effects. I know that my condition is continually changing --I can feel good and bad in the same hour--there is no homeostsis. I am constantly trying to remember what I did to make myself feel better and repeat it. Sometimes it will help but other times it doesn't seem to matter what I try--I am dizzy and need to lie down. The mornings are the worst and I am exhausted by the afternoon and need to nap. If I attempt to have what I would in the past call a "normal" day I pay for it the next. Exercise at your tolerance level helps as much as anything. Hope Nicole feels better soon.

Dear Nina, I hope everything went ok for you today also. I have had the vaginal ultrasounds many times and they're bad enough. I don't know how you work and deal with all these constant symptoms. You must be very strong.

Interesting article. My girlfriend's son has MS that was detected shortly after graduation from college. He always thought that it was caused by a Hep B vaccination. I also had Hep B vacination because I worked at a school. As far as I know there isn't any link betweet MS and dysautonomia, correct me if I'm wrong.

I can easily become disoriented if I am tired or don't drink a gallon of fluids at a time. The heat does it to me as well. I can only shop for about 20 minutes before I have to leave because of these feelings. I think the shopping causes sensory overload.

You can ask your doctor to order into his office some samples to try. It is by presciption. I tried it this past summer a few days and I think it gave me headaches so I stopped taking it.

I started by walking down the driveway, then added swimming about 6 months after I was initially ill. After almost two years with POTS I joined Curves because they have great leg strengthening machines and I needed to get out of the house. I just kinda skipped the aerobic part in between the machines at first but now 7 months later I can honestly say that it has helped tremendously. I easily go into sensory overload so I wore some earplugs at first to turn down the volume on the music. It bothers me less now. I also choose to go during a non-busy time so I can do what I prefer and not be made dizzy by a lot of other people in the room. The monitor is extremely nice and supportive. It sure beats PT and it is cheaper. Last month I started a beginner Yoga class because I felt I needed to push my edge a little furthur. Yoga is recommended to improve neurological functioning. My muscles are extremely tight and the stretching helps with a general feeling of improvement however short lasted it is. I always take a bottle of water of Propel with me and drink alot during my limited workout.

DawnA, I also have some spasm and weakness of the right shoulder muscle but it might be related to a calicification that is located on my superspinatus muscle insert. But for the first few months of the POTS starting over 2 years ago most of my musculoskeletal symptoms were confined to the left side. I kept telling the doctors that I felt weakness of the left side and they said I was depressed because I could move my arms and legs. One incompetent neurologist said "I am not impressed by weakness," whatever that means. I am also hyper-reflexive on the left side and have a left facial palsy that has improved over time. An EMG was attempted on my left arm last summer but it was so painful that it couldn't be completed.