songcanary

I have another thread about recent relapse and panic attacks but now I need advice about my blood pressure.  I have been a 90/60 person my entire life and since diagnosis seven years ago have been drinking two liters of salt water every day.  But lately my pressures spiked to 160/130 with the two recent panic attacks.  They are around 120/80 at rest, which is still high for me.  Now I am just sitting calmly and pressure is spiked again.  Is it possible I just don't need the salt anymore?  Anybody else experience this? I cannot figure out what is going on.

I should add that I had been taking been taking Buspar which another member said was a vasoconstrictor, which I didn't know.  So I am stopping that as well and will see how that goes.

Jennnn, thank you for that info and I am so glad you are feeling better.  My vitals are good today so I am laying low and keeping fingers crossed.  When I look back at the last 18 months I can see that I have been going pretty much nonstop.  I think my body is playing catch up.  From nonstop to stop lol.  Take good care.

Yogini I am glad you mentioned this.  Because I have had a slight headache since yesterday along with the elevated bp.  I never get headaches so something is off.  I think I will try backing off the Buspar dose and see what happens.  Always something.  I wish I knew what caused my panic attacks because now I am totally confused.

I was diagnosed with autonomic neuropathy and orthostatic hypotension.  Have been on Buspar now for about two years with stable BPs. It did really help with the recent episodes to bring my pressure down, although it is not yet back to normal.  Yogini, I did not know anxiety meds could worsen dysautonomia.  How does that work?  I certainly don't want to worsen things!  Was able to attend yoga class this morning, that was nice.  But that's all for today lol.

It was a very gradual improvement over five years' time.  In the beginning, I stopped work altogether and just stayed home.  I concentrated on de-stressing.  No obligations to be anywhere or do anything.  The most I did was keep my bird cages clean and I was exhausted to do that.  After a few months I started attending yoga classes but sometimes I couldn't go because I was just too weak.  And sometimes I sat in the back of class and did very little.  The whole trick with me is just to avoid becoming anxious, which I will admit, is extremely hard.  But that is what I needed then and I did it.  I can't give an exact timeline but over those years I noticed I would feel just a tiny bit better every day and I was encouraged by that.  

I know now that my husband's suicide put me into a tailspin but he died 1 1/2 years ago and I thought I was out of the woods.  Not!  So now I am starting over like I did before.  It is very frustrating but I am hoping that with the same patience I had before, I will pull out of this.  I wish the very same for you.

Thank you all.  Great time for a flare up.  Ugh.  My pcp said to increase the Buspar to 20 mg 3x/day to get me over this crisis.  But I guess I am fortunate in that I am able to take off work for awhile.  It means giving up clients but that's what it means.  Trying to look on the bright side.  Complete rest is what worked last time and hopefully it won't take years like before.  I am hopeful.  Bless everyone in this wonderful group!

Normal is 90/60.  It went to 160/130.  I am very shaky today but pressure is a little lower.  I am really scared.  Had to cancel all work this week.  I feel like I might not recover from this.  Will call dr today.

Writerly mom,

Thank you so much for your comments.  They were very helpful.  Today I had another panic attack, which came out of nowhere.  I was having a great day.  But I had forgotten my noon Buspar so I am hoping that by getting that dose in me, I will calm down.  I am starting to relax even now.  I wonder if something like Paxil would help me further.  My doctor recently increased my Buspar to 15 mg 3x/day and felt that would be ok.  But I am worried that I am more of a basket case than that because I just feel so frail.  Ugh!  

What do others take for anxiety and what seems to work the best?

Hi Sarah,

Thank you for mentioning the socks.  I had not been wearing them lately but will do that today!  I do have recent labs and look good on paper lol.  In the throes of panic I had not remembered these little suggestions.  Thanks so much!

Marsha

Thank you both.  I think part of the problem is my food allergies.  My body is so hypersensitive that when I react, my whole body feels sick and then I get scared which brings on the anxiety and the whole dysauto yada yada.  Need to eat even smaller meals and much more slowly.  I have a hate/hate relationship with food!  And stress, too   I have been practicing yoga for seven years now but even that couldn't help this last episode.  Need more practice lol.

TrainBoys, I hope you have good menopause support.  I didn't and it was really rough.  Oh if I could turn back that clock, I surely would.  So coddle yourself and keep ahead of it if you can.  

Thanks for your replies,  they really helped.  I truly appreciate it.

Marsha

Hi everyone,

I haven't posted in several years because I was finally feeling well.  It took eight long years.  But 18 months ago my husband committed suicide.  I surprised myself by surviving that without relapse.  I had even made plane reservations for a short trip this April.  Well, the closer that came the more anxiety I had, which ended in a full-blown, four-alarm panic attack.  My blood pressure doubled and it took three days to normalize.  I was scared to death.  Dr.  increased my Buspar and that has helped the anxiety..  But I am having trouble with feeling so cold and appetite loss.  Plus intermittent lightheadedness.  Some of the old familiar symptoms.  And it scares me because now I live alone and even though my husband wasn't much help when alive, at least someone was around.  I do drink two liters of salt water every day and only work part time.  Trying to keep the stress at bay.  

Has anyone else survived a relapse and how did you cope?  I wish everyone a good day!  

Marsha

P.S.  I am no longer taking Florinef or LDN.

Hi Relax,

It was very kind of you to post.  I was just starting to feel better when you were new.  And yes, I did get better also through most of the means you mention.  I have low blood volume, too.  The most important for me was salt water and yoga, both of which I still do and always will.  Chronic stress was killing me.  I had to learn how to handle stress; hardest lesson in my life so far and I'm still learning.  But I'm better at it now lol.  I do take Buspar for anxiety 10 mg once or twice a day depending, but it really helps.  I think I posted before that my improvement was unbelievably slow.  So all you newbies, don't give up!  Relax is right, you can get better.  Also, turning your busy life down a notch might seem impossible but it is what saved my life. So now there's two of us with good news!  Best wishes to all.

Marsha

Hi there,

I haven't been on the forum for a few years but I wanted to answer your question because I am going through the same thing right now.  YES stress doesn't just make dysautonomia worse, it can actually cause it.  This is what happened to me years ago.  But recently I have been having symptoms again since my husband passed away last October.  I was doing real well until recently, so it is scary.  I also have orthostatic hypotension so I know how that feels.  I practice yoga which has been extremely helpful but I still felt weak and out of it.  I increased the salt in my water and it is helping.  Please accept my sympathy about your pup, I am a retired vet tech.  Our dogs don't usually outlive us, that is what is hard about having a dog.  But 15 is a long life for most dogs.  We need to accept life as it naturally unfolds.  I am sending you hugs for a good outcome for your sweet dog, and I wish the best for you.

Marsha

I was diagnosed with this in 2010 at Cleveland Clinic. It's terrible. But it does explain why I jump to the moon if I'm so much as tapped on the back LOL.

Exactly the same experience for me. My WBC is always low, too. My doctor is not concerned about it but I think it doesn't add up either.

I liked this article. It is the first time I've seen in print about the uncontrollable shaking and feeling cold. Those and feeling faint were my symptoms the first time I was sent to the ER.

Congratulations Katybug. I'm really happy for you!

My husband has allergies like yours and is also on multiple meds. Recently he started showering before bed (at my suggestion, I read it somewhere) and he says it is helping. It is supposed to rinse the day's allergens away so you don't breathe them in all night.

It was around that same time that I discovered my food allergies. So I went organic and completely stopped eating anything from a box. I had to eliminate many foods but those I could still eat I bumped up with more protein, organic dried fruits, and nuts. I had read that protein is good for the adrenals. And the nuts and dried fruit provide trace minerals which are also good.

I think diet was probably the least important aspect of the change, but I still think it contributed a lot and I love my organic diet now. I used to drink Pepsi every day and eat lots of carbs but no more. Plus, last year I found out I am gluten intolerant so I am GF also.

I had all the symptoms of Addison's without the skin changes. But both my serum and saliva cortisols were off the charts high. A friend who is an integrative MD told me that it is common for cortisol to rise before it plummets. And that was me.

I radically changed my lifestyle to de-stress, and it really helped. I also improved my diet to help my adrenals. I took up yoga and stopped working for a few years. All those things got me through and today I am back to work part time and feeling well. But I will never forget that nightmare. I totally believe in the condition and it can take a real search to find a doctor who will treat it, but they are out there. And they're your best friends IMHO.

The day I added 1 teaspoon of salt to 2 liters of water I was washing walls within two hours. Keeping in mind I was non functional for the previous three years. It was a godsend and I still use that amount faithfully every day. I got my advice from the Cleveland Clinic.

Lynnie,

I actually don't take heart meds. My general instruction sheet said to continue them. So I was just passing along the information that I was given.

I'm going through a major hives flare right now and I don't know what is causing them. I HATE allergies grrrrr...

I had a colonoscopy recently and they specifically said to stay on heart meds, just hold off on everything else. So maybe double check about that?

And yes, I have multiple food and med allergies, too. I do tolerate fludrocortisone well, and also cipro and amoxicillin. But it's a short list. I know what you mean.

Yes Puppy, it has happened to me. Especially with the thyroid. That caused me terrible symptoms before I found out on my own research that I should seek a second opinion. It was actually the third opinion that treated me and I still see that doctor and he is the most helpful and caring.

You are so young and so smart. If I had known at your age what you do, I might have avoided dysautonomia altogether. The best advice is to get a hard copy of your test results, research online and get opinions from doctors who truly care about patients. That was the hardest part for me but it can be done. Keep shopping until you get a good feeling about the doctor. They are out there.

Best to you as always,

Marsha

I admire your attitude. And your spirit. So glad you had fun Puppy!