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Everything posted by gjensen

  1. Sylvie, we are all so different. I am going to comment on what I can share that might relate. Clonidine works by lowering epinephrine etc. At very low doses, it did help control my adrenalin surges etc. Nothing else was as effective. As a result it did lower the anxiety that was associated with these surges, and it did lessen an overall feeling of being on edge. So it did help, but it was no cure. I also was on a low dose. I could have went up, but I elected not to. Clonidine is commonly prescribed for people that have hyper pots, and/or present with a lot of sympathetic over activity. I certainly did early on. Clonidine is on my list of drugs that did help me, and I did tolerate. I was also surprised by Neurontin. Neurontin does help any anxiety I might have. It seams to calm a lot down without taking a drug that would affect my BP or be as addictive as the benzos. I looked it up after and was surprised to learn that it is commonly prescribed for anxiety off label. I am taking it for nerve pain. As far as benzos, I found valium much more effective than the others. It has more effect on the muscles, and it seamed to do better at calming the body down rather than my brain. Good luck.
  2. If it is any comfort, I had many of these issues earlier in my illness. I do not now. This has gotten better. Rarely will I get a mild relapse, briefly.
  3. Lindz, that is interesting that you are fine during the night, but have issues early. I do not now, but I had a sleep transition apnea. I would struggle during my transition to sleep. Later, I would be fine.
  4. A pulse pressure of 6 should put you down, and should be discussed with a doctor. How are you monitoring your blood pressure? Do not be alarmed, but do discuss it with your doctor. I get narrow, and too narrow pulse pressures standing up. Mine has been partially managed by increasing blood volume.
  5. I never sweated during mine, but I would shake at the conclusion of them. As if I was real cold. I would also have to urinate after.
  6. You have to be of the mindset that you can and will get better. De conditioning to cause POTS symptoms would be rather severe deconditioning. Regardless, getting in better shape will help POTS symptoms. It can be difficult to get in better shape with the onset of POTS. I would encourage you to do what you can to get in the best shape that you can without setting yourself back. Take it slow. One step at a time. Also, try not to add more pressure on yourself. Pressure, stress, anxiety etc. makes it all worse. Be good to yourself. Take it one day at a time. When you start to feel pressured, try to find a way to settle back down. This all requires patience. It is a series of small victories that can get us on our feet.
  7. I do not think that open toes will make you or break you.
  8. By getting in reasonably good condition and comparing. Good luck.
  9. I am sorry that you are experiencing this. It is no fun. The best that I can suggest concerning causes etc. is to go to a center that specializes in these disorders. There are panels of blood work that they can run. They can do more thorough testing, and have a better idea concerning your presentation. I suggest specialists and full autonomic testing. What region do you live in? Have you reviewed the doctors list on this site? I say all of this if you become unsatisfied with the progress you are making now.
  10. Josh, why did you start with 40mg instead of 20mg? What region do you live in? Have you looked at the doctor's list on this site? Could you try a poor man's tilt table test? That would be checking your blood pressure and heart rate after resting and laying down for 15 minutes. Then at one minute, three minutes, and five minutes standing in place. This would provide a general pattern only. What other medications are you taking?
  11. I had good luck with clonidine moderating the quantity and severity of "these spells". They do sound like some sort of sympathetic over activity, and adrenalin surges. And yes, these spells did become less frequent over time. It did take some time though. I am wondering where the red hands and shoulders fit in. Is this associated with anything particular?
  12. I have heard of an association of SFN and high doses for extended periods. There is another condition that they can cause, but even less likely at the typical doses like you did take. There is not enough information in your posts to say that it sounds like dysautonomia or not. Unstable blood pressure and Hr etc. are symptoms of it, but also many other things. It sounds like a work up would help you rule it out, or confirm it. I do not know where you are, but someone that has an interest in these conditions would be best suited to help you sort this out. Some cardiologists, neurologists, and GPs could help you. Others might not be as helpful. Maybe a new doctor and a fresh look might help you more. It can be hard to get past the anxiety/depression label. I am sorry it is like that.
  13. Small Fiber Neuropathy can cause numbness and tingling. I am sure some other things could. I would not think to MS first.
  14. It bothers me. I tolerate it well enough, but I am not who I was. Family members and friends have commented, so others have noticed. My wife is gracious enough to simply come back through behind me. What I am trying to do is learn how to compensate, and be at my best possible. I do have times that are better than others, but I have little control over it.
  15. I used this some time ago. Initially, I had no trouble with it at all. After some time, I did get some tachycardia from it. Nothing to write home about though.
  16. I used to be multi tasked and going in many directions at once. Now I do struggle. Especially with complex subjects. Cognitive difficulties is one of my major challenges. I am wondering if I can handle a part time job. I wonder what I can do. I would have a hard time providing change without making mistakes. I also have to be careful cooking. It is easy for me to forget and leave something on.
  17. POTS is not a terminal illness. It is a chronic illness that is more or less debilitating depending on severity and the root cause. Is it primary or secondary? etc. Stress, worry, and anxiety make it worse. Relax. Try not to worry, though it can be easier said than done.You will be fine. Most people are able to manage the illness well enough. For some it is worse than that, and some of us fall in the middle. Do not contribute to it though. Take it day by day. That is all you or I can do anyways. There are many things that can cause your symptoms, so you will have to rely on your doctors. I do not remember where you are, but there is a doctor's list on this site. It is helpful to see a specialist when it is necessary. Has your doctor talked to you about drinking more fluids and adding salt to your diet? Has your doctor brought up wearing compression stockings? Is there a plan in place to get your potassium levels up? That would be very important. Have you considered how you might keep your potassium levels up? These are things that should be discussed with your doctor. Keep asking questions as they come up. Many of us here have been where you are. It is scary at first, but it is not as bad as it seams right now.
  18. This is wonderful news. I am truly thankful to hear this news.
  19. That is a change Sarah. If you or your doctors become convinced that CAS is a concern, nitro may become a real consideration. I use the tabs, and was cautious about taking them. I feel comfortable with taking them now, but I still have to be cautious. Before I take a second, I check my BP etc. I cannot just pop them as some others without autonomic dysfunction may be able to. I do not remember if you are on a beta blocker or not, but that is worth considering. They are contraindicated with CAS. I have always had a hard time gauging an appropriate response in public. I am concerned about causing unnecessary concern for some. Chest pain is a common and often benign symptom of POTS. On the other hand, I suspect CAS and MVA is more common in POTS than admitted. Both of these are difficult diagnoses on their own. Not to mention that they have received more attention recently, and many cardiologists are not quick to consider it. Before Mayo diagnosed me with them, I heard a lot of inconsistencies among different doctors on this topic. ERs often do not consider it, and many of the doctors and nurses are up to date. Of course there are many that are also. A simple question or two usually reveals those that are and are not. Coronary arteries should constrict at rest. For some of us, they constrict too much. Should it be a surprise when we are already showing signs of adrenergic dysfunction? That the chest pain comes at rest, is a reason to consider discussing this with a doctor. Particularly if there is pattern. Mine come as I relax to sleep in the evenings, and the transaction from sleep to wake.
  20. It sounds a bit like some sympathetic over activity. I used to get a lot of this. Not tremors, but muscle twitching. Particularly, after prolonged periods of stimulation.
  21. My cognitive challenges are terrible without gabapentin. Be cautious about condemning a drug that could be helping something else. Cognitive difficulties are common with POTS, MCAS, etc. I am not saying that it is not a cause or contributor. It certainly can be, but so could something else.
  22. From the other side, early on, I had to limit my performance. Along the way, I did improve in this regard. I paid for it afterwards instead. For the most part, I have normalized. Most of my symptoms were related to sympathetic over activity. Especially after the big "O" as someone called it. I would have to "hold on", and ride it out.
  23. I did enjoy a simple frozen mango smoothie. It was a pick me up. I am enjoying Quinoa now. It only takes 15 minutes to make a simple cereal like oatmeal. It has a complete amino acid profile which is not common among plant based foods. The same would go for amaranth seeds.
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