AmyK

I recently had a virus (tough on us POTS folks I know😏). Didn't eat much for days...now still not eating much. I normally exercise 5 days per week which always helps my symptoms.  Could the virus andnl not exercising make my pressure go high? I had even taken a bit of a benzo and arginine in the am which usually helps. I am 38 yr old woman with 4 children.  Maybe just needing to exercise again? Thoughts? Anyone else experience this?

Thanks for your input Pistol

On 9/3/2018 at 1:24 PM, Pistol said:

In my case I improved enough on Lexapro that I can do mild exercises. The anxiety for me comes when my norepinephrine soars and in between that it's well controlled. Now my sister, who also has POTS, responded amazingly well to Wellbutrin. -- You mention that you had less anxiety on Celexa but also that it was hard to take it because it gave you anxiety. I am not sure if I understand that correctly - did it make the anxiety worse? Or were there other effects from it that made you not tolerate it? -- There are many SSRI's out there and if one is not good for you another one might. If you are able to exercise and you can do deep breathing and meditation etc to control the anxiety it is worth a try. It was never enough for me but it works for others. Best of luck!!!

Thanks for your input! Yes...so far I am ok .  We will see in a few months whether I will need to take something.  The celexa I took was h***. It made my panic worse so doc had me take klonopins (2-3) per day to offset the anxiety! However, after just 4 months I had zero anxiety and titrated off everything and it really did seem to work because for years afterwards I didn't need ANY meds (just workouts and taking care of diet,salt etc...) But it has been over 8 yrs since then...

Odd why I reacted that way but glad it worked. Our bodies are mysteries! Haha

People take them also to reset brain chemicals so to speak in order for panic/anxiety to go away. After several months on it, mine dissapeared and stayed well for many years afterwards.  In my case the panic/anxiety is strictly related to my dysautonomia. 

Did you eventually have to go on an ssri anyway?  I Have gone that rout before but only for 4 months, and it was nearly 8yrs ago. Would prefer exercise for a serotonin and boost and reset of my nervous system. The celexa I took for a few months definitely worked as I didn't have any more panic and for years! But it was so hard to be on it. I had to take 2 to 3 klonopins to not be in constant anxiety mode while on it. It did work though! Just trying to know if I should spend 5 months or more without it...any experiences welcome! 🙂

Thank you for these replies. I have been experimenting with digestive enzymes and have HCL with pepsin on the way via amazon.  Yes the carb amount was not helping the issue. I love carbs but worth it to feel better and has the added benefit of slimming down! I take the old school combination bcp.  The  nausea is subsiding a bit as well. I think my digestive issues stem from my Hashimotos hypothyroidism ( which is controlled well via meds.) Common for us to have gut issues.  Thanks again.

On 4/23/2018 at 12:26 AM, Jan said:

i should clarify that when I was on the pill, I took it without the 7 day break and didn't get a period.  Once in awhile I would get break through bleeding and the only way I could get it to stop was to go off for the 7 days and get a period. I would have to schedule the break for a week when I had nothing important to do because it was truly a horrible week with a migraine and POTS symptoms that were really bad. You can take any oral contraceptive without the break if you want to avoid the  hormone fluctuation and not get a period. You don't have to take one that is marketed that way.   

My OB/GYN also researched pills and prescribed one that was more likely to raise blood pressure, which in my case, was what I wanted. 

Oooh which one causes blood pressure to rise? I am guessing one that has been around for a while.   I usually do the 7 day break and get a cycle but may try to no 7 day break and see how things go!

On 4/21/2018 at 10:42 AM, Womble said:

Not tried birth control (I am not allowed to take it due to vascular type brain lesions) but have found adrenaline/panic type feelings have massively reduced on a decent dose of Chelated Magnesium.  I was very sceptical, but started almost a month ago and am shocked at how much calmer and less stressed I am.  I am also sleeping much better and my scary night episodes have reduced in both frequency and severity. (I was having adrenaline/sympathetic surges repeatedly all night during my pre-menstrual phase and since becoming perimenopausal, that was 3 weeks a month and rising.)

Might be worth a try?  If you do, you may want to avoid Magnesium Oxide, as it may upset your stomach and not get absorbed.  Magnesium Taurate, Glycinate or Chelated are the best ones to go for in my opinion.  Some cardiologist are now saying that just about everyong would benefit from some degree of Magnesium supplementation for hearth and nervous system healthy.  

Thank you. Good to know. Plan to get this on Amazon. 

On 4/19/2018 at 8:09 PM, Jan said:

I stayed on the pill until menopause. It really helped. Menopause also really helped, I highly recommend it.  Hot flashes are cake compared to migraines and POTS symptoms. 

 

I look forward to Menopause passing ! Haha

On 4/21/2018 at 6:36 AM, Jessica_ said:

I have heard it works amazing for most people! I seriously just need to try it despite my fears of medication. Crazy to have anxiety over taking anxiety medication it’s madness! Have you found it helps with your attacks? 

On 4/21/2018 at 10:42 AM, Womble said:

Not tried birth control (I am not allowed to take it due to vascular type brain lesions) but have found adrenaline/panic type feelings have massively reduced on a decent dose of Chelated Magnesium.  I was very sceptical, but started almost a month ago and am shocked at how much calmer and less stressed I am.  I am also sleeping much better and my scary night episodes have reduced in both frequency and severity. (I was having adrenaline/sympathetic surges repeatedly all night during my pre-menstrual phase and since becoming perimenopausal, that was 3 weeks a month and rising.)

Might be worth a try?  If you do, avoid Magnesium Oxide, as it will just upset your stomach and not get absorbed.  Magnesium Taurate, Glycinate or Chelated are the best ones to go for.  Some cardiologist are now saying that just about everyong would benefit from some degree of Magnesium supplementation for hearth and nervous system healthy.  

On 4/21/2018 at 6:36 AM, Jessica_ said:

I have heard it works amazing for most people! I seriously just need to try it despite my fears of medication. Crazy to have anxiety over taking anxiety medication it’s madness! Have you found it helps with your attacks? 

Haha😅Yes. It does and I take very little and works.  Also I take a little bit off a pill to help with sleep as well.  

15 hours ago, Jessica_ said:

I feel the exact same way!! The week before my period is usually the worst of all. Like you, I have about 1 normal week a month where I’m calm and can actually handle the freeway and other situations. The only thing helping me right now is pharma-gaba and even with that I still have anxiety it just takes the edge off. I have been given Klonopin which I hear is amazing but I still haven’t dared try it. 

Klonopin works wonders and if you just bite a small piece off of it that should take the edge off with you needing much of the drug. It helps with sleep as well but never in a groggy out of it way. It really calms the nervpus system.  

8 hours ago, Bluebonnet08 said:

I personally felt a thousand times worse when I was on the pill.  I feel like it's in part- what actually triggered this condition for me.  For me I think there is a big hormonal component to the disorder, as I felt the worse on the pill and during pregnancy.  

I always felt better pregnant (well minus the first 3 months). So, that may be why I feel better on birth control rather than off of it. I have more digestive issues now than I did in my early 20s on it. 

3 hours ago, Jan said:

I stayed on the pill until menopause. It really helped. Menopause also really helped, I highly recommend it.  Hot flashes are cake compared to migraines and POTS symptoms. 

 

Jan I am already looking forward to menopause and being more calm. I will take the hot flashes over these mood swing, anxiety,.digestive issues etc...any day and time.   I really wish I had a remedy.for the digestive issues I have on the pill though.   Other than those I feel much better.

Hello!

Has anyone experienced nausea, belching and bloating with birth control  and found relief? I feel so much better (with some of my other dusautonomia symptoms on the pill) and would hate to stop it.  But, the bloating, nausea, and digestive issues may do me in.  I've done ginger root. I need zofran at times but really don't want to take meds.  TIA!!

Has anyone experienced relief of panic/anxiety that comes along with the hormone fluctuations of the menstrual cycle using birth control? I am 37 and have had 5 children (done I may add) and I only feel normal 1 week out of the month.  Looking for relief.   I was on the pill overa decade ago and did ok with it.  Thanks!

Has anyone experienced relief of panic/anxiety that comes along with the hormone fluctuations of the menstrual cycle using birth control? I am 37 and have had 5 children (done I may add) and I only feel normal 1 week out of the month.  Looking for relief.   I was on the pill overa decade ago and did ok with it.  Thanks!

Wow.  Had no idea. Thank you!

On 1/3/2018 at 8:16 AM, DizzyGirls said:

Yes!  I have two daughters with Dysautonomia (POTS as well as other forms) and Ehlers Danlos Syndrome.  My youngest was having a real problem with anxiety and we mentioned it to her OB/GYN and she put her on the pill (Microgestin 1/20) and she has done sooooo much better.  She decided to run each month back to back, no period in between because it was really causing problems.  She's been on those pills for almost 2 years now (she's 19).  It's been a lifesaver!  My other daughter gets the depo provera injections every 10 weeks.  She has real migraine problems, so she can't take the pills, but the shots are wonderful as well.  She doesn't have anxiety, though. 

Thank you!  I am 37 and noticed it has really gotten so much worse during my cycle. I am going to talk to the doctor about getting the pill.  So glad your daughters have something that has helped them.  

Has anyone experienced relief of panic/anxiety that comes along with the hormone fluctuations of the menstrual cycle using birth control? I am 37 and have had 5 children (done I may add) and I only feel normal 1 week out of the month.  Looking for relief.   I was on the pill overa decade ago and did ok with it.  Thanks!

Thank you.  I plan to take it.  I will buy extra bananas.  That is very good news that it helped you. 

Have you found any of these to relieve any of the depression or anxiety symptoms and increase blood flow?  The first is a precursor to serotinon and would prefer to go a natural route if possible rather than take an ssri. Any luck with other supplements?? TIA!

On 12/6/2017 at 5:25 AM, Jessica_ said:

Thank you! The struggle is VERY real. Having Little’s makes it SO. MUCH. HARDER. Cheers to us for being mommy warriors with this terrible illness! 🍻

I will drink to that! Cheers!🥂

On 11/30/2017 at 4:23 PM, Jessica_ said:

Did the clonazepam make you sleepy? I have a 2 & 4 year old and I need a med that doesn’t cause drowsiness, it that’s even possible! 

No, it calms the nervous system, but I try to take as little as possible as I also have littles.  I bite a little off the pill, which helps tremendously.  Back when I was on the ssri though I would need one pill with the medication and two pills before bed as that is how awful my panic was with it! I do take some to help with sleep which seems to work well and doesn't cause morning drowsiness like benedryl. The struggle is real.🙄 Best of luck.  

Years ago, a doctor placed me on Celexa and mentioned my anxiety and mood would be much better after a few months on it. I had worse panic attacks on it, so he then prescribed Clonazepam which helped ease the anxiety quite a bit.  He endedup being correct. In about 4 months  I was feeling better and titrated off of the meds. I still have to take a benzo before my cycle as my anxiety gets so much worse then.