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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.

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So sorry for your loss! I can say from my own grief experience it can really mess with your wellness. I am 8 years into my POTS life and I am very functional now but I still worry I'm going to go back "there" and be in constant episode mode like when I first got sick. I've had some times when I thought oh Lord please no but they came and went. I am in menopause now and it's been a little challenging but I believe it's only temporary as I go through the change. I pray you will feel more like what you had been and this is a short lived set back! 

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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

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Hi Marsha, 

I'm also so sorry for your loss. 

I've also relapsed after about a year of feeling very well.  It turns out my electrolytes have a hard time stabilizing now for some reason.. have you had labs checked? Also had some other issues but those were rare. Maybe they could run some thyroid labs. Are you wearing compression socks? Those help me tremendously.  Hope things get better for you soon. Sarah

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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

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I also have hyper pots, and was advised by my pots specialists to take in a certain amount of sodium and fluids every day. I had high BP before this and it's not any higher because of the sodium intake. It has something to do with expansion of blood volume and kidneys.  There are past threads on this. 

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Hi, Marsha- I'm so sorry about what you are going through! I relapsed severely in 2014, at least partly due to stress, after about a year of improvement. Have been back on track since that fall. I haven't been on here much but logged in today after receiving a quarterly newsletter from dinet for the first time... saw your post so just wanted to say there is hope. I totally understand the panic of backsliding and feeling alone. The fact you got better once is a good reason to expect it again. Paxil made a big difference for me in regulating my whacked out nervous system, helped me get my appetite and sleep back. Compression socks/stockings were helpful too. Ugh this condition is the pits! Sending healing thoughts.

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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?

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@kalamazoo There are multiple subtypes of hyper pots.  One of them has low blood volume and needs additional salt.  The other subtypes should be avoiding additional salt.

@songcanary I'm so sorry that things have been rough for you.  Your blood pressure doubled???  How high did it get and how high is it normally?

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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.

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I take a low dose of zoloft and I think that has been helpful, although it really messed me up the first few days I was on it.  I tried Bupropion, but I didn't respond well to it since I am hyperadrenergic and SNRIs increase norepinephrine levels.  

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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!

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5 hours ago, songcanary said:

Complete rest is what worked last time and hopefully it won't take years like before.  

Could you please expand on what you consider complete rest and for how many years? I'm about 90% bed bound at this point and feel like I'm just getting steadily worse. I do have some other bad problems but I feel like the dysautonomia from the POTS is limiting me more than anything else. I've probably had POTS for at least ten years but up until four years ago, had relapsing and remitting symptoms for years. I was hoping I could have some kind of remission again after these past four years of consistently worsening problems.

I hope you get enough rest and go back into remission again.  

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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.

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I am so very sorry for everything you are going through.   Have you spoken to a POTS doctor?  A doctor who is treating your anxiety might assume that your anxiety is causing high BP and give you more anxiety meds.  But that wouldn't help the dysautonomia and might even make it worse, depending on the side effects of the medication.  There are even some POTS meds that help with both anxiety and POTS - like beta blockers and SSRIs - to think about.

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Hi Marsha, don't have much to add just wanted to let you know that I'm very sorry for your loss and hope you are able to cope. Glad you remembered to come here for help and comfort! Warm wishes

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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.

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I never heard of Buspar before your post.  But I just searched on the forum and this post says it is a vasoconstrictor, which increases BP.  If you are experiencing high BP, you might want to ask your doctor or pharmacist whether this drug makes sense for you.  You can also make a separate post on the forum to ask people about their experiences with this medication.  We are pretty sensitive to meds as a group and I think non-POTS doctors usually do not think about the potential impact on POTS.

 

 

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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.

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