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Raisin

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Everything posted by Raisin

  1. Yes! That is a great idea. I have one and it really really helps me. I got mine from Amazon and I believe it was about 40 bucks and came with removable ice packs. After about 3-4 hours, the material does get wet on the interior which can make my shirt wet but that is the only disappointment. And, it isn't dripping wet or anything like that. You can get cool patterns if you make one yourself! Good luck!
  2. This is interesting. When I have tried SSRI's in the past, I felt very manic. My vascular Pots doc said that SSRIs can make pots symptoms worse but SSNRI's (not sure of the letters exactly) can help some people. I didn't ask the reasoning at the time because I wasn't interested in trying any of them at the time due to past experience. But, I am now wondering if I have the hyperadrenergic type of pots or something else going on that makes me just a bad candidate for any of them. I guess we are so similar yet our bodies reactions to things may be very different. Still, discussions like this are certainly helpful!
  3. It has helped me a lot. It makes my scalp itch about an hour after I take it. That is a no brainer trade off for me. Hope it helps you!
  4. Yes. I think that will be my next venture....may the force be with us.
  5. Hi Sarah! Yes, I go to CC currently. I see a Dr. Jaeger who I am happy with so far. I am grateful to my current neurologist for finding my Pots but we seem to be on different pages currently so I am scheduled to see a Dr. shields who is part of the Dysautonomia clinic there. But, yes! I would like that Uh docs name. What the heck? I am experiencing alot of leg ataxia a d really need guidance. Also, is HTN hypertension? I don't know! Lol I am grateful to live near both hospitals. Thanks again Sarah!
  6. Maybe you can set up a semipermanent video cam at the top of the steps? And leave a light on. I am reaching for ideas I know but it would be so helpful it sounds for you to get it documented. It is nice that your hubby instinctively knows. You must have a strong connection! Or lots of angels that wake him up!
  7. Thanks Bellgirl! Thanks Sarah A33! My pots doc at Cleve. Clinic said there are "other meds" but he said he hesitated to put me on anything due to my being 48 years old. He said some are steroids which would not be good for me for some reason. I do take midodrine through my current neurologist but I am switching neurologists. Therefore, my appt is July 15 . I think my pcp wants to stay out of the pots realm as he doesn't want to step on toes. I will wait for the 15th as I have certainly been dealing with the adrenaline-type surges for a loooooong time. Sarah, I have had the out of breath marathon type feeling. My midodrine increase has helped that a great deal. I am learning through this great Dinet.org that my symptoms are physiological and not in my head. Dizziness for me has been a product of blood pooling for me as well. To be honest, I realize now that my "true" anxiety is now linked to my doctors appts. As I freak that someone will not take me seriously (again) or make a rude comment like "Boy, have you had alot of tests! " with a scowl. THAT is anxiety producing. It is a battle and I shall plod forward with prayer!
  8. Thanks so much SarahA33. My surges are intolerable for me as well currently. My next neurology appt. can't come quick enough! I wouldn't be surprised if I don't just run in and quickly yell out,..."Clonadine pleeeease! " lol Don't worry DeGenesis.....I won't really do that. I will be cool. Lol
  9. Hmmm... Well not knowing complete testing history, I wonder if you have had the test (radio nuclear test? I can look it up as I had it done) to see if blood is pooling (certainly sounds like it) and how much is pooling. I also had a test on the calf muscle pump (ultrasound) to see if it is functioning correctly. Midodrine has helped me alot but I have low blood pressure. It may have increased my blood pressure a bit but not by much because almost everytime they check it, mine is still in the low range. The slowness of speech and thought is also what I get with my blood pooling I believe (mine is 40% pooling just upon sitting up.....not even standing yet). My Pots doc is a vascular doctor so I don't know if I cardiologist is the person to order such a test. I know you also mentioned not living in the USA so I don't know what facilities you have or do not have near you. Just some thoughts......
  10. I am so grateful as I feel I have a new road to explore in attempting to feel better. I have an appt. with a new neurologist July 15. I hate to wait but I have certainly waited for a lonnnnng time for other things as so many of us have. Loonymom, I will explore that testing kit. Thanks! GJenson, I do take a beta blocker and tried to increase it with dr. Knowledge before but my heart rate was going too low. I do believe it helped the surges but I was so tired! P.s. let us know about Mayo please and God Speed! My rheumatologist appt. was rescheduled for 10 days from now because the doc was ill. I will keep everyone informed. DeGenesis, I will practice the techniques of team building. I am an awesome advocate for others,....stumble around for my own care.
  11. I tend to agree that some docs may not take a reported symptom seriously unless they witness it. I am a BIG FAN of the video tape! Myself, I plan on walking until my ataxia shows itself (takes about 5 mins. Of walking) before my next neurology appt.. This will be a new neurologist. Then, I will yell out..." hey! Check THIS out!" .Lol. Would your husband be willing to video one of your seizures? I suppose you would need to document your oxygen level at that time though. That might be difficult. I feel for you and I understand the frustration level is high. There must be a way.
  12. Prayers sent your way! Remember, the best thing about surgery is you are asleep while it happens! Lol
  13. I got the calm feeling the other day with the disorientation type of feeling. It was bizarre. But, I decided to just let it be because I loved the calmness. Who knows what is going on in these bodies of ours.
  14. No sorry DeGenesis. I can't seem to help here. I did show decreased blood cell mass. I hope your research leads to more answers! God Bless.
  15. Thanks so much guys. Lewis, I also take Propanadol currently. It certainly helps me with my tachycardia but so far it hasn't touched my "lion in the room" feeling. My doc said I can increase if I want but I am concerned to do that because my heart rate now sometimes goes down to about 50 during rest. Sometimes during a Tilt Table Test, the docs will draw blood measuring catecholamines. This is very helpful in diagnosing hyperadrenergic Pots I believe. Looneymom, I sure hope Tyler gets better! You are such a wonderful advocate. It sounds like it might help Tyler's sleep as well? DeGenesis, it sounds like you are very knowledgable re this. Thank you for responding. I am going to discuss this with my doctors. It is worth a try. I do take midodrine which helps the blood pooling so much. I don't know if I can take them both. I will get the docs opinion. I have a hard time asking for things like this because I am afraid they will think that I am trying to be a doctor myself.
  16. Thanks so much guys. I will do some more homework. At least I know it may be a possibility for me in the future. Hope is a wonderful thing.
  17. Hi AnaBanana! My docs told me not to sleep in them. I could take a guess as to why but then ....I would just be guessing. Lol.
  18. Not an expert here but I do believe symptoms can come and go. Good for her that she went to the hospital! Many people tend to minimize their symptoms and not get them checked out. Women also may get different symptoms from the more well known symptoms of heart issues. God Bless and let us know how she is doing. Always better to be safe. I'm sure they will be watching her closely to make sure she is ok.
  19. Oh thank you gjenson! Perhaps this may help me. Maybe I can grab a little hope in that. Did you have your neurotransmitters tested at Mayo? It sounds like they are really looking at things for you. I will let you know how my rheumatology appt. goes tomorrow!
  20. I am wondering per others comments if clonidine HCL might help me. I get adrenaline type surges which I have interpreted myself as anxiety but I do not have a psychological component. More like a panic attack without panicking about something specific as another member discussed. The issue I see though is that I do not have high blood pressure. I have low blood pressure usually. My TTT was done without testing the neurotransmitters. I did do a 24 hr. urine concerning these but I wonder if I "did it right" as I just relaxed on the couch all day and didn't move much as I was just trying to stay near the bathroom. Lol. They were in normal range. I have never had my cortisol levels checked either. Any wisdom? Thanks!
  21. I am wearing them sometimes. I just got some pink ones! I figure I can wear these with shorts as they look kinda sporty. So far, they seem ok. I have bad blood pooling but my feet never seem to get red or purple. The ones I ordered , though, do seem tighter around the top so I have to watch that they aren't actually cutting off my circulation. That would not be good.
  22. One of the secretaries at my docs office said she coughs when her heart is "acting up". I don't know what she has re heart beat issues but I guess people can cough as a sign of beat issues.
  23. Good luck Gjenson! You sound like me where symptoms seem to come and go and then revisit just for ol times sake. I hope you can take a video of it so if it is not happening the day of the appt., you can show them what is happening. I found this helpful with my leg ataxia.
  24. I just bought a cooling vest and I love it! It has pockets that you put cold packs in all over it. It has really helped me. I went on a motorcycle ride today with my hubby and the vest lasted for a good 3-4 hours keeping me cool. It seems to help me to keep my core area cool as I also don't sweat enough. (anhydrosis on arms and legs, hypohydrosis on core) . Got mine on amazon. I am going to go to a zoo with my family soon and I am also going to use a wheelchair. I am nervous though that I am going to get emotional because it will be the first time I will be using one. Ugh.
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