Severe Depression-The Real Thing.

[POTLUCK]

Anyone with experience with NE type antidepressants and POTS with high BP lying and standing-"a hyperadrenergic" type?

I have developed very severe depression abrupt onset a few months ago. Had increasing insomnia prior but now it is terrible insomnia and depression, and stopped running so POTS is worsening. Hard to tell which symptoms are POTS and which are depression now. SSRI's have had intolerable side effects, and most of the antidepressants to try work via NE, such as SNRI's. I have heard these can increase HR and worsen POTS.

Does anyone know? There is not much literature or info on POTS, and Depression as a separate but genuine diagnosis available. Never had manic symptoms but had severe depression many many years ago and not since.

[Raisin]

I wish I could help more to answer your question Potluck. I don't have hyperadrenergic pots according to my neurologist but my NE did go to 750 standing. Over the past, I was unable to tolerate snris. They made me feel like I was plugged I to an electric socket and I was not sleeping which then became a vicious cycle. No sleep, more depression. I wanted to answer your post , though, because I just want you to know you are not alone. Depression is certainly very real and needs to be addressed. Do you remember what helped you in the past? Hugs to you.

[POTLUCK]

Thanks Raisin It is not clear what worked in the past, but it might have be have been Selegiline oral.

[Katybug]

Potluck!

I don't know the answer to your question but want you to know you are in my thoughts and prayers for a quick recovery from the depression. I experienced clinical depression in my late high school and early college years and it is a dark place. Know that there is light and it is waiting for you. Hugs.

Katie

[blueskies]

Hi potluck,

i am sorry to hear you are dealing with strong depression. Years ago I had severe postnatal depression so I have a pretty good understanding of how hard it can be to deal with. I do suffer from dysthymia ( chronic low grade depression) and experience periodic dips into deeper depression - often tied to how well or badly I am coping with pots symptoms.

I have not had great success with ssri and no success with snri s. I did take zoloft at one point (my pots was undiagnosed at the time) and did quite well on it. At about the six week mark my mood started to lift and it was not until I had to stop it ( it was thought to be a possible cause of an anaphylactoid episode) that I realized, after it had left my system, how well I had been doing on it. I did try it again two years ago but it triggered migraines. Chronic migraine is one of my problems and the zoloft triggered migraines that would break through despite my pain medication. This happens to me with both ssri andh snri anti depressants.

One antideprssant that would have been good, possibly, if it had not aldo triggered migraine for me was Valdoxen. I stayed on it for about a month as it was giving me great, wonderful, glorious sleep but I was forced to stop it because it too triggered migraine. It was so wonderful for sleep that I persevered for the month hoping my body would adjust and the migraines would fade away enough back to usual levels and frequency, but after a month I had just experienced too much head pain. If one of the latest theories about migraine is true - that a cause of migraine can be low serotonin levels - it makes no sense to me that I now respond to those antidepressants with migraine. If migraine was not a problem I think I would be be still taking the valdoxen.

I did take an old tricyclic antidepressant for 10 months not long after I was diagnosed with POTS. Called Endep. It was prescribed for migraine pain and I thought it was going to cause migraine but tried it to keep my neurologist happy. It did not cause migraine but didn't really help them either but it did left my mood enormously. I was very happy, a little too happy. I became what I think of as just a little too happy - I ended up only sleeping two hours a night but not feeling tired. I was swimming 2 km everyday. I felt great, and apart from constipation and migraine (not increased by this med but not alleviated either)I saw good improvement in my other pots symptoms. It improved so many of my symptoms. Except for my constipation problems, as they intensified even more when I was on it. I had to stop the Endep because of the 'little too happy slightly manic' behaviour.My psychiatrist told me this can happen to some people. ( I am not bipolar btw,these sorts of antidepressants can bring on extreme mania in people who have bipolar disorder, from what I understand.)

[looneymom]

Hi Potluck,

I don't know if this would help but have you tried Zoloft? I know this medication is used with POTS patients. The other thing that might help is some morning sun about 10-15 minutes with a kitten to pet. I know this sounds crazy but it helps me and my son on really really bad days. I'm sorry to hear you are having such a rough go. A chronic illnesses can bring this on in the patient and care giver. My son has tried a few other medications but the side effects are bad. The other thing you might have your doctor check is iron, D, and B vitamin levels. These influenence the hormone levels and a defiencey in any of these can make depression worse. Hope you feel better soon.

[blueskies]

Sorry, i am posting from a tablet and it auto corrects at will plus it is did cult to write posts with it - so please forgive any spelling mistakes or nonsensical words.

If I did not have the problem with migraine I think both zoloft and valdoxan could have been good for me. Just being able to get good sleepgoes a long way to Iimproving my mood and valdoxan did improve my sleep.

I have another ssri to try -citalprolam. About 6 weeks ago I had another episode of deeper depression and the psychiatrist and I thought that citalopram could be good if I could tolerate it. But I have been too wary of increased migraine to get up the nerve to take it. Luckily the darker depression had lifted now, for the time being.

I have gone on, but wanted to detail my experiences as fully as possible.

Blue

[valiz]

I am on an SNRI, generic effexor. I have been on it 3-4 years. It helps keep my B/P up and helps my dizziness. I have neurogenic POTS and or hypovolemic POTS. So I think it would be way different for you. I took amitryptlin 10 mg and that took my B/P down and I was passing out so had to stop that. It worked well otherwise. I do hope that you can find a medication that works for you and is without side effects. My thoughts and prayers are with you. liz

[artluvr09]

I think maybe some can have an adverse reaction and make symptoms worse. My experience while on 40 miligrams of celexa was not that great. I suffer from anxiety so my doctor prescribed celexa. I was on it for a couple years and have been off it now for about a little emore than a year. The celexa seemed to make my anxiety and moodiness worse. It also gave me hypoglycemia. I never had hypoglycemia but I got it right after starting the medication. Also I was dizzy a lot more than I am now without it. I was never able to lay flat on my back or I would get dizzy. I also know someone with the same medication and same dosing that I was on and they had hypoglycemia. Ever since going off celexa my anxiety is getting better and I don't have hypoglycemia anymore. I still get moody at times. I also avoid nitrates or foods with lots of preservatives because they make me really moody. I also try to avoid foods with a lot of sugar. I hope you feel better soon!!

[Chaos]

I use Wellbutrin which is dopamine/NE and do well with it. While I have components of hyperPOTS, I don't have consistent high BP. For insomnia and sleep phase shifting, I've had good success with LDN and melatonin combined. Took awhile for it to start working but it has helped my sleep tremendously.

Have you looked into methylation/B12 issues at all? That is thought to be frequently involved with some of this. Might be another route to explore.

Sorry you're struggling with depression. As miserable as POTS symptoms can be, I'd rather deal with them any day of the week rather than go back to the black places of depression I've experienced in the past.

Hugs!!!

[Raisin]

I find it I treating that so many are bringing up vitamin deficiency. I was very down about 2 months ago and found out my B6 is very low. Doc said it probably wouldn't be clinically significant but I can say that since I have been supplementing with B6 , I think I am now on an upswing. please know you are not alone. Hang tight! I have never heard of Selegiline. I will look that up!

[POTLUCK]

Thank you all for the responses. They are very much appreciated.

Blue- Argomelanine is not available in the US, though sounds like a good choice with my insomnia, maybe I could get it online or somewhere. Zoloft caused an intolerable "restless" feel that may have been akathesia. Endep appears to be amytriptiline a TCA that is worth a shot. Tried Lexapro which is one of the dual Enantiomers of Celexa ( Citalopram) and thus likely to have the same side effects. The sexual side effect it caused I also consider intolerable. Tried Remeron to assist but it caused crazy Heart rates at doses above 15- i.e Noradrenergic doses.

Looneymom-same on Zoloft. Does the sunlight require petting the kitten?

Valiz- Yes I am concerned about the NE effects and have not tried it at this point.

Artlover09-same on Celexa as above.

Chaos-my understanding is that although Wellbutrin does have a small DA effect it is mostly NE so this may be good news. Not sure what LDN is. Do not know much about methylation issues.

Started Emsam patch last week and HR numbers are pretty crazy- lying drops to 70 then slowly rises to 95, standing diurnal variation-higher in the morning as always but numbers are much higher now and seem to slowly rise rather than just go to the spot. Symptoms are hard to tell if worse, as depression and POTS are both worse in the morning and best at night.

The depression is very, very bad and unexpected, and I appreciate all the input and well wishes.

[Chaos]

LDN is low dose naltrexone. Here's a link to a review article on it's use by a researcher from Stanford http://www.ncbi.nlm.nih.gov/pubmed/24526250

Methylation is complicated and I'm certainly no expert but basically it refers to genetic blocks in one's ability to utilize folic acid (in particular) and B12 in the forms they are being presented in modern dietary forms. As one of my docs said, he was trained that it was no big deal because 20-30% of the population has these genetic mutations, but he's finding in his practice (specializing in POTS/ME/CFS, looking at acquired mito issues, etc) that >95% of his patient population has these mutations. While he doesn't think it's the cause of our problems, he thinks it could be a component that needs to be addressed.

The C677T gene for example has been linked to high homocysteine levels and increased risk for thrombosis. According to Ben Lynch's website the A1298T mutation has been linked to

The BH4 cycle is absolutely critical for these various functions:

1. assists the breakdown of phenylalanine
2. helps form these neurotransmitters:
   • Serotonin
   • Melatonin
   • Dopamine
   • Norepinephrine (noradrenaline)
   • Epinephrine (adrenaline)
3. cofactor to produce Nitric Oxide (NO)

You can google Ben Lynch at mthfr.net for more info. There are also lots of other sources of info online about it. As you know B vitamins are critical in mood and nervous system function though so it might be a serious consideration to think about. If you want more links I can send you some.

Hang in there. Depression is the worst!! That's why it was so frustrating when POTS onset and the docs kept saying I was depressed. Umm, NO, I'm not! Been there, done that. THIS is not depression. Nasty, but not depression. Same neurotransmitters seem to keep popping up though so clearly some fault in the system keeps rearing it's head in various ways.

Totally unable to tolerate SSRIs or SNRIs other than kind of tolerating a microscopic dose of zoloft. For some reason Wellbutrin and my system seem to do really well together.

Sure hope you can find some relief. Sending best wishes and lots of hugs. Stay strong!

[E Soskis]

I don't have any words of wisdom or recommendations but, just know you are not alone. One of the first symptoms of dysautonomia I experienced was a deep, profound depression that was resistant to all medications. I tried everything available - nothing seemed to work. Fortunately, my psychiatrist was also an expert in pharmacological therapies and neurological disorders and he began to put two and two together: dysautonomia depression that does not respond to traditional medications for depression. It's not a chemical imbalance in the brain - it is the nervous system going haywire. Treat the nervous system malfunction and you treat the depression. I'm much better now but, it was a real battle for about 7 years - suicidal at times. Now, I am very vigilant for any signs or symptoms of it re-flaring - I never want to get that bad again.

Hang in there - treat the dysautonomia - and know that you are not the only one who has experienced this - I'd give you a hug if I could....

[POTLUCK]

Depression is horrible, and hard to hang in there. MAOI Emsam patch is causing HR's to act really crazy and psychiatrist would like to increase patch dose from 6 to 9. HR's are likely to get even worse, and with low dose Beta blocker I am on these HR's will make it even more uncomfortable. This can affect sleep also when adrenaline or noradrenaline go so high, and HR high along with it. The insomnia makes the depression worse and may even have been part of the cause of the depression, and the POTS appears to have made the sleep worse slowly over the years.

Worst, the biggest thing helping my POTS was the running and I stopped that with the depression.

It is hard to explain the POTS to the psychiatrist, and follow up appointments are only 15 minutes.

All of this has caused me to go out of work, and is causing major problems in relationship also.

Taking care of POTS with Propranolol and running was just so brittle, all it takes is something like this to just spiral everything.

[sue1234]

Have you considered seeing a Functional Medicine doctor? They tend to get to the root of things, and one might be able to help find what is out of whack in your body to cause such severe depression all of the sudden. I have never had severe depression, but lighter depression many years ago. It is HARD to get through your day and normal activities when you can't count on your brain to mastermind it all. I hope something gives for you!!

[POTLUCK]

Depression is also worse in the morning (by far) and nonexistent in the evening, which matches the cycle of my POTS numbers and feeling of being worse in the morning and better in the evening.

How would one find a functional medicine doctor?

[sue1234]

Look up here for a list of practitioners, and what level training they have: https://www.functionalmedicine.org/practitioner_search.aspx?id=117

I began seeing one a few months ago, and they were the ones that discovered I had chronic EBV. Now whether it is truly affecting how I feel or just a number on a lab slip, I'm not sure. We are still working slowly on that. But they did run some different labs that other doctors didn't do.

BTW, functional medicine doctors are regular MDs, who are getting this extra training. You can read on the website.

[blueskies]

Hi Potluck,

would it be possible for your psychiatrist to exchange info with your POTS doc?

Mine has done so in the past and it has saved me a lot of explaining. In the beginning my pots specialist sent copies of his reports of my visits and tests to my psychiatrist to keep him up to date. My psych has better knowledge of POTS, because 8f this and his interest, than my GP.

blue

[yogini]

i don't know much about depression, but believe that beta blockers can contribute to depression.

[POTLUCK]

On 9mg patch now couple days. Depression doing better so maybe patch helping. Heart rates are very hard to understand. Similar to described above for 6mg but higher.

POTS doc and psych will not talk- wish they would.

I am on low dose b-blocker but that and running only things that have helped POTS in past.

[POTLUCK]

Very Severe "clinical" depression is better on 9mg patch but POTS is much worse and tremendous anxiety/fear feeling. Am not very functional and sleep is very, very bad. It was with depression also but feel more exhausted now. HR's and POTS symptoms doing crazy things. I would give anything to be off this MAOI with the POTS, but it has been working for the depression.

The psychiatrist has put me on 2 mg of Klonopin for sleep and anxiety at night, and this is a huge mistake in my opinion. It only works for sleep, a few weeks per the literature and is a very potent benzo. 0.5 Klonopin=10mg Valium. I have now been on this months, and a very slow (months ) taper is recommended but the symptoms of taper are described as things like " increased HR, anxiety, adrenergic symptoms, and insomnia" Thus tapering it will clearly make my insomnia, POTS, and anxiety symptoms all much worse, but staying on it, it does little to help, and the longer I am on it the harder to taper. The insomnia is worse than ever and the psych now wants to add Ambien. I was on Ambien, which was not working anymore when the depression started and it was stopped abruptly by the psych when the Klonopin was started. This was also a mistake in my opinion. There are very few sleep meds I can take while on an MAOI. ( For example cannot take low dose trazadone, or imipramine) The exhaustion is awful and makes everything else worse, so I may need to take the Ambien but it will stop working with time again and I will be addicted to more prescriptions.

Both on and off the MAOI seem unbearable.

It is also unclear to me why Klonopin effect lasts only hours, but it stays in your system. Shouldn't it work continuously. The half life is 20-50 hours, so it should be near a steady state level in my body. My psychiatrist does not know this either.

It also takes a long time to get a new psychiatrist.

[Raisin]

Potluck, I understand what you are saying about the Klonopin. IMO, it is very very important to do a taper off benzos and it needs to be a very very slow taper. At the same time, I have to say that benzos are the only thing that seems to calm my nervous system down. Interestingly, when I take my promethazine for nausea at night, I sleep very well and have less anxiety the next day. I know these work on the central nervous system. It is a constant quandary trying to figure out what works and what doesn't for each of us. it sounds like the depression in the am and not in the pm should be a very good clue for someone to help you figure out. What is your body doing in the am and not in the pm, right? Hmmmm.....I wish I could figure this out for you! Someone out there will. Keep hanging in there. This too shall pass.

[POTLUCK]

Raisin-thank you. The AM increase in POTS and depression seems to be a circadian rhythm. The large doses of benzo's worry me. The idea that I need to stay on them yet the eventual difficulty with withdrawal upsets me.

Mostly just feel miserable on MAOI and off, just different forms of misery.

[Raisin]

Yes. I have the same fear of the benzos as I went off them cold turkey once (NOT smart) and had an EXTREMELY difficult time. In fact, I probably should've been hospitalized. I fought staying off of them for a year but then realized that for me, my daily anxiety was truly dehabilitating and affecting my relationship and causing depression because I couldn't see my way out of just struggling through my daily existence. I haven't been able to take any type of antidepressant in the past so I couldn't think of any other options. I do notice also (speaking of circadian rhythms) that if I am asleep before 1 am, I can be ok the next day. After 1 am, I am a mess with the pots and anxiety. I know you have had sleep trouble. I wonder what would happen if we just slept through the mornings and woke up at noon? As crazy as it sounds, maybe we would override the cortisol surge or whatever the heck is happening in there.....just sayin. One thing odd also that happened to me on the Tilt test. Near the end of it when I was experiencing pretty severe pots symptoms, I just let my head kinda drop down. The nurse asked why I was doing that. I said, "I don't know." she asked if I wanted her to adjust the pillow so I could put my head back up. I said "No, actually, I'm feeling depressed." I found it interesting that as my pots symptoms got uncontrollable, my body automatically went into a depression phase. It didn't feel like a reaction to my situation but it did feel like an actual trigger physiologically if you know what I mean.