gertie

Do hay fever & other seasonal allergies affect those with dysautonomia worse than others? DH & I both have a sinus problem but it affects us differently. My nose, mouth, tongue & throat are on fire, I have a slight sinus drainage, & feel like awful. He has a slight drainage & he feels fine. It's ragweed season here so I'm pretty sure we're both allergic to the same thing yet it doesn't seem to bother him at all. I have extra sensitive nerve endings & DH obviously has none. I'm just wondering if I'm just a wimp or do we react differently. Is there any way to numb our nerve endings? I'm trying Neurontin to see if that helps but so far it hasn't stopped the nasal & throat burning. Thanks.

I think the EMF detector is a good idea. I am very sensitive to EMF's. They can cause migraine or seizures for me.

My systolic is usually 140-159 & diastolic 60-70, pulse 65. It's been that for 25 years. Dr's have wanted to give me med's for high BP but I've always been afraid my diastolic would drop further.

A cup of warm prune juice before breakfast usually works well. Drink it with a straw & it doesn't taste too bad. You also get your potassium.

I won't get either flu vaccine. I'm one that almost died from a reg flu shot & believe it is what started a lot of my illness. I had a lady from the health dept tell me she would never take the shot because she had seen to many reactions to it. She said you should read the list of side effects & things that could happen from getting the flu shot. They make everyone sign a form before they give them the vaccine. I don't remember ever having to sign anything before getting a flu shot.

I have vasovagal syncope but my symptoms are not exactly like yours. My syncope is usually brought on by pain in abdomen area, odors of food, perfume, chemicals. My neuro told me that some people have a vasovagal response to things like having their blood taken. I do get sweaty, nauseous, dizzy, BP & heartrate drops. I have been to cardiologist several times & by the time I get there he always says my heart is fine. Be sure your salt has no additives. I use Real Salt sea salt. I find I do better to "try" to stay from chemicals as much as possible. I think you should get a second opinion. I have not found a dysautonomia specialist in Ga or Tn & I've been looking for awhile. Good luck!

Thanks for your replies. It seems everything that might help me is something I can't take. I feel like I'm always whinning about something probably because there is so much that happens to us with dysautonomia.

I know what you're going through. I'm behind with dental, eye & dr appt's. There are no cabs where I live & it's at least an hours drive to a decent hospital & no one available to drive. I always feel guilty when DH needs me to drive him & I can't do it. Be patient & hopefully you will be back driving in no time. Trouble is the day I could drive I don't have an app't.

The only advice I could give you would be don't use Metamucil or any fiber drinks. That type fiber added to my problem. Not only was I constipated I ended up having anal tears from it. I eat white rice, white bread, bland foods, everything the dr's say is unhealthy. I can't take Miralax but I can tolerate a small glass of prune juice before breakfast which helps some. An old remedy if you can tolerate it is raw kraut unpasteurized, never heated. Start with about 1 tblsp & increase daily. It gets the digestive juices going. good luck.

How many of you experience vasovagal syncope when having severe colon cramps during a BM? What med's do you take? I know I've probably discussed this before but everytime I have an episode I get so depressed you would think I had never experienced it before. It is so traumatic to me to think that I may end up passed out in such an obnoxious situation. It may last 30 min before any relief & then I can hardly walk back to the bed. Now that I'm older it takes hours to recover. What would I do if this happened while away from home? I would end up in the floor in a public restroom with you know what all over me. At home I keep a table so I can fall over on it but away from home no such prop. I keep Levsin S/L in my bathroom. I don't know when it is going to happen so I can't take anything to stop it or if there was it would probably be to sedating. Sorry this is so long. Thanks

Use unscented products & don't wear anything bright & flowery. Keep a fly swatter nearby. I find with dys/POTS scented products start my sweating, migraines, passing out etc so my house is fragrance free until a guest reeking of perfumes upsets everything. Another reason I hate hornets is they kill the butterflies & dragonflies. Hornets are vicious.

I get anxiety just thinking of going to dentist for a cleaning. I ask for no epinephrine but the last time I had a filling the numbing shot had worn off before dentist got through. I was under such stress & I knew if I mentioned it to the dentist I would get another injection & it would take a lot longer. Somehow I got through the pain. When I was a child I passed out at the dentist everytime they gave me a shot. It was probably the epinephrine in the shot that caused it but that was over 50 years ago & no one knew about dysautonomia.

I have been able to tolerate Ativan (lowest dose) which I only take as needed. I don't know if it would help the problem you mentioned. Valium is too sedating for me.

I've tried accupressure & accupuncture & neither helped me. It seemed to make me more tired & with accupuncture I had huge bruises everywhere I had a needle. I was told never to have lymphatic massage only light massage.

I've thought of this because I can't fast for the colonoscopy. My problem with it is I have vasovagal syncope & faint when having an enema of any kind. I hope it works for you.

I've asked more than one dr about this & they can give me no answer. I may go several months & drinking OJ, eating tomatoes, or anything acid will not cause me any problem. Then suddenly everything I put in my mouth that is slightly acidic will cause one jaw & one of the glands in my neck to swell. It feel like I am taking the mumps. The dr checked me last week & said my sinus were congested but that's all he could find. It started this time about a month ago when I had a toxic exposure to glue. Has anyone else experienced this? Could this be related to dysautonomia in some strange way or maybe my immune system has gone haywire again. Thanks.

I've had dysautonomia for many years & just when I think I am learning to cope with everything something happens I never thought of before or I have another illness to add. I can't remember a day of feeling "normal".

Thank goodness for all of you. Decongestants & any kind of nasal spray except saline, soda or herbs is out. For some reason ,no one can figure out, all those things cause me to seizure. I'll never have all the answers to my quirky symptoms but getting an answer occ helps. Thanks.

I have sinus congestion, or years ago it was called vasomotor rhinitis, both sinuses almost totally blocked, no drainage that I'm aware of, but lymph gland swelled. It's causing my Meniere's to act up so I'm dizzy & off balance to say the least. I can't take antibiotics & if I could the PCP told me just to nasal rinse & I've also been taking Allegra which has not helped. I've lost track of time but I think this is about 3 or 4 weeks & no better. I have 2 questions: Could this rhinitis be a symptoms of dysautonomia or ANS response? I do have allergies to the world but my environment is clean & I'm watching everything I eat for fear I will make it worse. Also, does anyone take Claritin & does it help you? Thanks again, I depend on you all so much since my dr doesn't really understand what I'm going thru.

Maybe you should change doc's. Situations where the dr won't listen to you is very frustrating.

Does things appear to be spinning? If so, it sounds like vertigo. I get this from Meniere's. You might want to keep dramamine or mcclezine on your nightstand to take when this happens.

I wish things could be better for all of us. After so many years of fighting this illness I seem to have lost the desire to do anything or go anywhere. I don't mean to sound pessimistic but I know (from experience) whatever I do or go the trip will end negatively. My DH is a person that loves to go. If I think I can make it through grocery shopping with him he always has 10 other places & things he wants to do while we're out. When I go I want to do one thing & go home.

Thanks for your comments. I feel better knowing I'm not the only one that has these problems.

I can't remember when I've felt capable of driving but since I'm older I feel I should keep trying. I'm afraid if I completely stop I will lose the ability. My family thinks I should be driving all the time. They don't seem to understand I don't have enough sense of direction to go to an area I haven't been before & that I also have bouts of vertigo & passing out. What do you do when your concentration is gone & brain fog takes over? I feel like DH is getting disgusted with me but somehow I don't care. thanks

I've tried synthetic & Armour for Hashimoto's but I couldn't tolerate either. Armour messed up my vision but doc is not believing that Armour was the cause. He said he's never had anyone that had a problem with it. Other than the visual problems I did ok with it. Start with a low dose is you're worried you might have a problem. Good luck!