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About Pistol

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    gardening, my family, reading

    " And I think to myself - what a wonderful world!"
    Louis Armstrong

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  1. Pistol

    Balance issues

    I am glad you are feeling better. Lexapro ususally takes up to 6 weeks to really kick in but it IS very helpful, I take it too.
  2. I have hyperadrenergic POTS and have had problems with anesthesia but have had local anesthesia at my dentist without problems. However - he used what he called " the old " anesthetic which apparently has less adrenalin. Not sure what that is, sorry. But to be on the safe side - PLEASE arrange for someone to go with you and can bring you home in case there are problems.
  3. Pistol

    Low Diastolic / trembling

    I am wondering if you are on BP meds? Maybe they need to be adjusted? I had something similar happen to me years ago when they were messing with my meds and one of them had to be cut in half and I was fine.
  4. Pistol

    Balance issues

    Yes - I have had balance issues where I actually feel like Falling all of a sudden. Sometimes I even just start leaning to the left side, walking into walls etc, as if a giant magnet is pulling me to the left. In the past these symptoms were attributed to my POTS. Recently they have gotten worse, I saw a neurologist for it, had MRI. CTA etc --- all normal. I take meclizine for bad days, it helps some. Next I guess I will have to go to ENT to rule out vertigo from inner ear. However - the dizzispells and balance issues were my first symptoms of POTS, long before I started with full-blown symptoms. So I wonder if it is not from the orthostatic intolerance, especially since often it develops after standing up or in the shower?
  5. Well - if your xrays show fecal build-up should you not take MORE fiber? Also - have you had GI studies done?
  6. Note to self ( and others ) - DO NOT attempt to shampoo half of your bedroom carpet. Apparently those of us who still think a good spell equals being "normal" are just stubborn, because activities such as spring cleaning are CONTRA-INDICATED!!!! I am 51 years old and had POTS for a long time yet still have not learned that lesson.
  7. Well - mind you that this is just my own personal opinion and not medical advice, but I think that is another one of those theories that someone came up with. There is NO proof that dysautonomia starts in the gut, maybe a study that claims that many dysautonomia patients have GI problems in common. Although I do admit that many patients - myself included - have longstanding nutritional deficiencies and GI problems. Some patients have GERD, IBS, others have gastroparesis ... I personally believe the studies that have proven this to be a SYMPTOM of dysautonomia, not the cause. The problem with dysautonomia is that because the ANS affects soo many body systems it is very difficult o pinpoint what is the cause and what is the symptom. If your neurologist knows of a study that definitely links dysautonomia to originating in the gut I would really like to read that because it would be groundbreaking information. ---- I DO however follow a diet avoiding raw fruits and veggies because I have both severe GERD as well as IC and do not tolerate raw foods. I was concerned about eating only cooked foods but a dietician told me that cooked veggies are OK as long as they are not cooked in tooo much liquid or as long as you also consume the liquid it was cooked in. I - again, personally - doubt that low fiber is good for anyone except people with DIAGNOSED ( through testing ) GI conditions where this diet is indicated. But I am not saying you should not follow the advice of your doctor, just ask him for more info since you obviously have some doubts about this.
  8. I agree with bluebonnet - whenever I had autonomic testing or TTT"s I had to stop All of my meds ( A SCARY thing to do!!!! ).
  9. Pistol

    Anyone with EDS and POTS

    Thank you so much @Bluebonnet08 - that is very helpful!
  10. @yikespanic - check out thedysautonomiaproject.org, they have a physician list and have 2 doctors from Cleveland clinic listed on it.
  11. Pistol

    New to This...Thoughts Welcome

    Just a thought - I also have Raynaud's, it affects my feet the most. Be careful with compression hose as it can trigger symptoms. I can not use them at all - my feet turn ice cold and then bright red when I take them off ( the hose, I mean ). I tried but had to stop wearing the hose after checking with my doc.
  12. Pistol

    Anyone with EDS and POTS

    @Christy_D - thank you, I thought it might be a geneticist but wasn't sure. Do they take a blood sample to confirm the diagnosis?
  13. I am not sure if it affects blood work but I just wanted to let you know that one of my many meds is a SSRI and once we increased it b/c of a bad spell of POTS symptoms. The increase actually made me worse, so we had to go back down. One concern: I have good times and bad times and sometimes I feel stable and then it turns on me again. If you DO indeed end up having POTS - please do not test your limits that extremely since it could set off a reaction you do not want. But I very much hope that your tests come back negative and your symptoms are gone.
  14. Hi - I have POTS and my husband has symptoms of joint-hypermobility. My 13 year old daughter has been displaying symptoms of POTS as of late and she also shares all of the hypermobility signs of my husband ( she can bend herself in half and has many abnormal joint issues ). I am hoping to save her from developing full-blown POTS ( I am disabled from it so she is very scared of getting it too ). I would like to have her checked for EDS but do not know what doctor to ask, so here is my question: what type of doctor diagnoses EDS? I would like to go that route before I send her to a cardiologist or autonomic specialist because of her fear of getting POTS. I really would appreciate any Input and thank you in advance.
  15. Pistol

    hello, I’m new here

    @Shannoncr - all those symptoms sound exactly like POTS. You wanted to know about syncope - I have both syncope and seizures from POTS and for me I am completely out with both, except for a few times when I remembered what people said while I was passed out. -- I always follow a low - sugar diet and no concentrated sweets because I have hypoglycemia from POTS. Plus I have really bad GI issues from dysautonomia so I have to avoid many foods ( I also have IC so I cannot eat acidic foods ). Your Gi problems may also come from POTS. I have learned that frequent small meals are better tolerated than three regular ones, plus it helps with the blood sugar ( that may be an issue for you too? ) A lot of people develop GERD and IBS with POTS and it may be helpful to cut out some foods ( sugar, dairy, gluten etc. ) to see if you feel less bloated and nauseated. Any frequent Gi problems should be checked out by your doctor though, he may want to do testing. --- I also have to plan any activities beforehand. Since I am mostly housebound I only go out to appointments or - if able - to church, my husband does all the shopping and driving ( bless his soul - he takes our 13 year old daughter clothes shopping, could you imagine?) Before I became disabled I ignored my symptoms and I know the floor in Walmart very well - plus many other stores and public places, caused quite the stir in my prime! Now I have learned to listen to the signals my body gives and only go places where I can sit down when needed and my husband can take me home when I get bad. I used to walk for exercise and many times I got stuck sitting on the ground until someone found me and took me home because I just could no longer walk. --- It does not get to this point for everyone though, there are many treatments that can help - and do for many. But until you find the right treatment for you it might help to follow the signs and adjust your day around your symptoms. -- I hope you feel better soon, maybe you can let your mother read some posts on this forum if she has difficulty understanding what it is like. Best wishes - Susanne