Anxiety

[Jessica_]

I feel like anxiety is one of the worst symptoms of my POTS. I hate to even admit that it has become a problem because since day 1 of this all of the doctors I have seen have tried to blame all of my symptoms on anxiety which is not true. I believe my hyper-pots has induced the anxiety. It has become so bad that i am having troubles driving and I won’t take the freeway anymore. Now let me get to my question! 

What anti-anxiety med helped you best for hyper-pots? I tried Zoloft and everytime I would take it within an hour I would have a huge attack and would have tremors. It was awful. I don’t react to medication normally so I just want something mild that will take the edge off. 

Any suggestions?

[AmyK]

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.

[Jessica_]

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! 

[MomtoGiuliana]

I took an SSRI which initially made my anxiety and surges a lot worse but after about a month (!) I started to feel a lot better.  SSRIs do seem to help about 50% of POTS patients, according to studies I've seen, however the adjustment period can be hard.

[HangingByAThread]

Vanderbilt likes to prescribe Methyldopa for Hyper POTS.  It did away with my anxiety (plus it is really inexpensive and I've had no side effects).

[Jessica_]

12 hours ago, MomtoGiuliana said:

I took an SSRI which initially made my anxiety and surges a lot worse but after about a month (!) I started to feel a lot better.  SSRIs do seem to help about 50% of POTS patients, according to studies I've seen, however the adjustment period can be hard.

I would love to find one that worked. Did yours get rid of the surges? I think the surges are what plague me the most and cause the most anxiety. 

[Jessica_]

12 hours ago, HangingByAThread said:

Vanderbilt likes to prescribe Methyldopa for Hyper POTS.  It did away with my anxiety (plus it is really inexpensive and I've had no side effects).

Never heard of this one! Definitely worth looking into. Now i just need to find a doctor willing to help *sigh*

[TCP]

I agree the condition causes the anxiety. I read an article about this about five years ago saying the dysautonomia is a precursor to the anxiety. 

Doctors often come out with the psychological/anxiety stuff when they haven't got the answers. 

[bombsh3ll]

I take diazepam which greatly helps the physical anxiety symptoms but not the lightheadedness or headache. The anxiety is definitely physical, it stems from the body's activation of the fight or flight system due to hypovolaemia. 

It feels exactly the same as when I lost a large amount of blood through postpartum haemorrhage - tachycardia, sweating, shaky, lightheaded, intense fear, feeling like you're dying. Because that blood loss was visible, I was in ICU getting blood transfusions, saline etc. Now, although I am chronically missing probably about the same amount of my blood volume I can't get any help for love nor money. 

[Jessica_]

20 hours ago, TCP said:

I agree the condition causes the anxiety. I read an article about this about five years ago saying the dysautonomia is a precursor to the anxiety. 

Doctors often come out with the psychological/anxiety stuff when they haven't got the answers. 

So true! I never knew how faulty our medical system was until I desperately needed it. I am blown away how awful I have been treated by many of the doctors I have seen and the neglect I have felt. 

[Jessica_]

10 hours ago, bombsh3ll said:

I take diazepam which greatly helps the physical anxiety symptoms but not the lightheadedness or headache. The anxiety is definitely physical, it stems from the body's activation of the fight or flight system due to hypovolaemia. 

It feels exactly the same as when I lost a large amount of blood through postpartum haemorrhage - tachycardia, sweating, shaky, lightheaded, intense fear, feeling like you're dying. Because that blood loss was visible, I was in ICU getting blood transfusions, saline etc. Now, although I am chronically missing probably about the same amount of my blood volume I can't get any help for love nor money. 

I totally agree that the anxiety is physical however, sometimes I feel like my anxiety triggers the surges and I haven’t been able to figure out the off switch on that. I am really hoping to find a medication or something that can calm my body down so I am not in this constant state of fear. 

[bombsh3ll]

If you're not keen on/cannot obtain benzodiazepines, have you tried a beta blocker? I don't tolerate them as they reduce cardiac output and cerebral blood flow even more, but some with POTS find them very helpful.

[AmyK]

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.  

[katcanny]

I use to have bad adrenaline episodes, I would be laying down or even asleep wake up be hot sweaty feel like vomiting then the shaking and trembling would start all through my body uncontrollably my partner rushed me to the er first time this happened we didn’t know what was happening to me I started taking propranolol which is a beta blocker I didn’t want to I had heard they are very hard to wean off of but it has helped with a lot of my symptoms and I have no more adrenaline surges when they start my body sort of resets itself it’s a strange feeling but you get use to it and then the adrenaline just goes away.  It is also used as a preventative for migraine and after care for people who have had a heart attack too so really win win 

[MomtoGiuliana]

On ‎11‎/‎30‎/‎2017 at 11:58 PM, Jessica_ said:

I would love to find one that worked. Did yours get rid of the surges? I think the surges are what plague me the most and cause the most anxiety. 

Eventually the surges completely went away, while I was on the SSRI (for several years).  I cannot say for sure that the SSRI was what helped with that, but I did start to feel better within months of starting the SSRI.  I was on Prozac.  Lowest dose.

[Jessica_]

On 12/2/2017 at 1:53 AM, bombsh3ll said:

If you're not keen on/cannot obtain benzodiazepines, have you tried a beta blocker? I don't tolerate them as they reduce cardiac output and cerebral blood flow even more, but some with POTS find them very helpful.

I have never tried a Benzo because like a lot of people on here I am terrified of meds! I don’t react to them like “normal” people do. I am on Propanolol right now which has helped with my night time attacks but it’s not helping with the on edge feeling and the sweating and body rushes. 

[Jessica_]

On 12/4/2017 at 8:35 AM, MomtoGiuliana said:

Eventually the surges completely went away, while I was on the SSRI (for several years).  I cannot say for sure that the SSRI was what helped with that, but I did start to feel better within months of starting the SSRI.  I was on Prozac.  Lowest dose.

The only SSRI I have tried is Zoloft and within an hour of taking it I would have an attack every time. It also made my daily anxiety worse. Maybe a different SSRI would work? *sigh*

[Jessica_]

On 12/2/2017 at 4:03 PM, katcanny said:

I use to have bad adrenaline episodes, I would be laying down or even asleep wake up be hot sweaty feel like vomiting then the shaking and trembling would start all through my body uncontrollably my partner rushed me to the er first time this happened we didn’t know what was happening to me I started taking propranolol which is a beta blocker I didn’t want to I had heard they are very hard to wean off of but it has helped with a lot of my symptoms and I have no more adrenaline surges when they start my body sort of resets itself it’s a strange feeling but you get use to it and then the adrenaline just goes away.  It is also used as a preventative for migraine and after care for people who have had a heart attack too so really win win 

OMG the exact same thing happens to me! I will be asleep for 2-3 hours and wake up in a sweat and heart racing and eventuallh the tremors start which means it’s coming to an end. I am actually on Propanolol right now which has helped with the night attacks. It’s not helping with the anxiety tho and the sweating and sometimes my HR will still go up to 140 with these feelings which is a improvement from 170-180. I would just like to find a med that covers it all. If that’s even possible!

[Jessica_]

On 12/2/2017 at 1:28 PM, AmyK said:

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.  

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! 🍻

[MomtoGiuliana]

9 hours ago, Jessica_ said:

The only SSRI I have tried is Zoloft and within an hour of taking it I would have an attack every time. It also made my daily anxiety worse. Maybe a different SSRI would work? *sigh*

Essentially the same thing happened to me with Prozac.  However my doctor strongly encouraged me to stick it out to see if it would help.  He insisted this would get better over time.  If he had not so strongly encouraged me I might have stopped it.  After about a month I started to see improvements.  It was a very difficult time!

[katcanny]

If you don’t mind me asking how long and how much propranolol are you taking? I have to take it three times a day 10mg tablets. I started on one tablet a day and had to move my way up to three times a day for it to fully be effective for me. Aswell as fludrocortisone that I take for blood pressure. I also had to cut out all caffeine as that could start off my adrenaline too.

[Jessica_]

On 12/6/2017 at 1:54 PM, katcanny said:

If you don’t mind me asking how long and how much propranolol are you taking? I have to take it three times a day 10mg tablets. I started on one tablet a day and had to move my way up to three times a day for it to fully be effective for me. Aswell as fludrocortisone that I take for blood pressure. I also had to cut out all caffeine as that could start off my adrenaline too.

I don’t mind at all! I am currently taking one 10mg pill twice a day. The bottle says I can take 2 but I am trying to just stick with 1 so my body doesn’t become too dependent on them. I started these in September. My goal is to be med free someday (because I hate medication) but lately I am discouraged that it will ever happen. I stay away from caffeine too! I miss my frappechinos  

[Gregory Mendoza]

I was diagnosed with POTS a few years back and anxiety is something that I've been trying to navigate as well, but you guys have it way worse than I do. I still want to share my experiences just in case someone reading this forum doesn't need meds, but is still dealing with anxiety from dysautonomia or wants to try something alongside taking their meds. SSRI's always made me feel terrible and I would have panic attacks every time I'd take them. I was too afraid to take them after awhile because all they'd do was make the attacks worse. I told my doctors I rather ride the anxiety wave than drown under it because of the meds. So I got off of them. I tried smoking pot when I lived in California, but all that did was make the anxiety worse whenever the high wore off. It was later explained to me that while the pot numbed the areas of the brain that created anxiety that when those areas of the brain came back online they would produce more anxiety. What I've found helpful was mindfulness meditation, progressive muscle relaxation, deep breathing exercises and listening to soothing music, changing my light bulbs to warm colors, basically everything I could to destress my life and I started going to counseling to work through the issues that having POTS brought up. Ruined relationships, couldn't work, basically things that would naturally cause anxiety that the POTS was making worse. If you need meds stay on the meds, but I think these can be positives in addition to whatever you're doing already. Best of luck! 

[Jessica_]

1 minute ago, Gregory Mendoza said:

I was diagnosed with POTS a few years back and anxiety is something that I've been trying to navigate as well, but you guys have it way worse than I do. I still want to share my experiences just in case someone reading this forum doesn't need meds, but is still dealing with anxiety from dysautonomia or wants to try something alongside taking their meds. SSRI's always made me feel terrible and I would have panic attacks every time I'd take them. I was too afraid to take them after awhile because all they'd do was make the attacks worse. I told my doctors I rather ride the anxiety wave than drown under it because of the meds. So I got off of them. I tried smoking pot when I lived in California, but all that did was make the anxiety worse whenever the high wore off. It was later explained to me that while the pot numbed the areas of the brain that created anxiety that when those areas of the brain came back online they would produce more anxiety. What I've found helpful was mindfulness meditation, progressive muscle relaxation, deep breathing exercises and listening to soothing music, changing my light bulbs to warm colors, basically everything I could to destress my life and I started going to counseling to work through the issues that having POTS brought up. Ruined relationships, couldn't work, basically things that would naturally cause anxiety that the POTS was making worse. If you need meds stay on the meds, but I think these can be positives in addition to whatever you're doing already. Best of luck! 

Thank you so much for your response! I have been trying to find ways to naturally calm my anxiety. My problem is with my 2 and 4 year old I’m having a hard time finding the time to do the meditation and yoga that I would like to be doing. I am also in therapy for childhood trauma. I find it interesting that a lot of us potsies had traumatic childhoods or other anxiety issues before the pots came on. I wonder what the link with that is 🤔

I am hopeful that I can get a handle on this even if it takes some medication temporarily. *fingers crossed* 

[Gregory Mendoza]

4 minutes ago, Jessica_ said:

Thank you so much for your response! I have been trying to find ways to naturally calm my anxiety. My problem is with my 2 and 4 year old I’m having a hard time finding the time to do the meditation and yoga that I would like to be doing. I am also in therapy for childhood trauma. I find it interesting that a lot of us potsies had traumatic childhoods or other anxiety issues before the pots came on. I wonder what the link with that is 🤔

I am hopeful that I can get a handle on this even if it takes some medication temporarily. *fingers crossed* 

 

I wouldn't be surprised if there was a connection. I've been reading The Cortisol Connection which is basically arguing that the way we live in general is stressing us out and making us sick.  I didn't start searching for a medical diagnosis until after the most stressful year of my life. But then I also think that Ehlers Danlos Syndrome had a lot to do with me developing POTS too. The beauty about meditation is that you can do it at any point for however long you have, if you're at a red light or standing in line at the bank or even doing dishes. The country singer Jewel actually talks about how she does it while raising her kids. You can probably find the video of her talking about it on youtube and she has a website called JewelNeverBroken.  Jason Stephenson has a great youtube channel, as well. His meditations are being put to use in Australian prisons as a way to calm the inmates.