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I am hoping that someone could shed some light on my physical condition that has been ailing me for over 4 years now. I believe I have some form of dysautonomia (specifically POTS) but am only 85% sure. I have seen many medical specialists over the past 4 years and just last year, back in 2016 I had a doctor agree with me that my condition was POTS but I would like to hear others opinions on who have this as some of my symptoms are rather bizarre and how I came down with POTS is definitely different from most stories I hear. I will try to condense this as much as a can but this post is going to be long no matter what so please bear with me. I am looking for answers as I feel debilitated everyday and am having trouble functioning and just want my life back.  In my background I am going to explain my story and then I will have a list of all symptoms once finished.  

Background: This all started back during the end of 2012. I was in college at the time and I was studying for my finals (sometime in December). I remember for most of that month I was under a good amount of stress as I was trying to play catch up with my grades.  I was studying a lot and occasionally pulling all nighters. During one of the finals I had coming up, I borrowed a friends Ritalin to study (I know it was not smart of me to do  but I only took 15mg) and then went to the library to study.  Afterwards,  when I was done studying which was 5 or 6 hours later, I went back to my house which was sometime around 10pm to make some dinner. I knew I had to go to sleep that night but was not really tired (due to the Ritalin). I told my roommate how I needed to sleep and he suggested that I smoke some of his marijuana. I hesitated at first because I did not think that it was a good idea but figured if I only had a small amount that I would be fine. Keep in mind that this marijuana that I was about to smoke was not laced with anything or synthetic,  it was bought from a trusted source and was very potent. At the time I did not realized how potent it was. When I had puffed it I took too big of a puff. Right then and there I knew I was in trouble as I had not smoked in a very long time and am hypertensive to marijuana.  Next thing I know, my heart is beating very fast, skipping beats palpitations etc and am having a massive panic attack. I stayed in this state for about 2 or 3 hours.  I wanted to go to the hospital but my roommates kept trying to calm me down telling me how I am fine and was  not going to die. Once this all passed, I did not feel right.  This is what I believe was the onset of the POTS, dysautonomia.  The first 2 symptoms that I had which were very bizarre was a very wired/stimulated type sensation, as if I am on caffeine or some other type of stimulant and insomnia/hypnic jerk ( insomnia and stimulated type feeling I sill have to this day).  When the week passed and finals were over I went back home and went to my PCP who I told my whole story to. He then ran a bunch of tests and said I was fine and had anxiety.  At first I believed him even though something really did not feel right. When I went back to school my PCP told me to go see a psychiatrist which I did and was prescribed Remeron for sleep .Luckily the  Remeron helped for sleep.  As the months went on I started having more symptoms,  such as numbness, tingling, bizarre aches and pains that I have never felt. Eventually come around month 3 or 4 was when the heart symptoms started to kick in. I noticed how I would feel heavy chested and somewhat out of breather walking up stairs, I felt my pulse and noticed how it was very fast.  I also noticed how my heart rate would increase changing positions. This would just progress as time went on.  What definitely did not help was I was still in school bombarded with work. I was constantly working and under alot of stress from 2012 until about almost 2017. I believe that this has played apart in having my illness get worse. When I mean progressive I am expressing my heartbeat has gotten faster and stronger, worsening insomnia and the wired type feeling that I have (like I have an IV of coffee going through me) is getting worse. With those 3 main symptoms I have also had a myriad of other symptoms which I will list. Throughout this I have had probably over 60 to 70 different symptoms. I have had so many symptoms that I can't even remember some of them.  Right now I can barely go to sleep as my heart rate increases and beats rapidly when I turn  to my left or to my right. Every time I stretch my heart beats rapidly as well.  When I go into a sitting position my head fills like a balloon. My heart also beats with more force now. I can feel my heartbeat all the time and it is not just me being overly aware. My heartbeat now shakes my headboard.  So far I have seen Cardiologists, Neurologists, Gastroenteritis , PCP's Psychiatrists,  and the majority have said that I have anxiety. One neurologist thought I had autonomic neuropathy, but the other 2 did not seem to agree.  My theory behind what I think might be going on is that I have tipped my autonomic nervous system out of balance after smoking that potent marijuana and being in a sympathetic state for too long but that is my assumption. I think the stimulated type feeling (feeling like I have just drank 2 pots of coffee) is my body in a sympathetic dominant state and the fact that this feeling gets stronger is due to all the stress I have been through with school and not allowing my body to take a breath.  When I went to the Cardiologist which was back in December of 2016, he ran a tilt table test, Catecholamine Urine Test, Cardiac CT Scan,24 Hour Holter monitor, electrocardiogram and blood work and an echo-cardiogram and all came back normal.  The cardiologist told me that just because the tilt table test came back normal does not mean I that I do not have POTS.  I guess I should also bring up that I am a 26 year old male Caucasian 6'3 180. Only other known medical condition I have is Celiac Disease ( I eat a gluten free diet btw).  I may be hyper mobile as I have noticed that I am double jointed in some areas. I have had my kneecap dislocated twice. My joints seem fairly laxed. If anyone has any idea as to what I could have done please let me know.  One other symptom that I have that is really bizarre and this might get a little to graphic sorry is when it comes to sexual intercourse or masturbation (specifically masturbation), my heart beats much harder and stronger than ever before.  Regular exercise does not seem to get the heart contracting as hard or fast. Could this be possibly due to too adrenaline, nor-epinephrine, etc. I am at my whits end with all of this. I can not live a normal life anymore. I don't know how much more of this I can take.  I have been though so much in the past 4 years that I question to myself how I have had the strength to overcome the downs that this condition has brought on. I am sick of feeling sick and figuring out how to get through the next day. I am sick of feeling sleep deprived and feeling unrested. I am also extremely sick of feeling my condition progress. I am hoping that someone can give me support as well as answers. I am just hoping that there is a light at the end of this tunnel.  If anyone has any answers, suggestions, advice, doctors, similar stories, similar symptoms PLEASE LET ME KNOW! as I am desperate for answers. I have an appointment for Cleveland Clinic in December but I am unsure of whether or not to keep it. I do not want to go up there unless they are going to do a complete head to toe examination and test for everything and well as give me an accurate diagnosis. 


Tests that I have Had: Echo-cardiogram, EKG (multiple times), Holter Monitor, Pulse Oximeter, Tilt-Table Test. CT Angiogram of Heart with contrast, Chest XRay, CT of Brain, MRI of Brain, vast amounts of blood work. Blood work has tested for vitamin/nutrient deficiencies, hormones (such as thyroid and testosterone),  Blood Cell count etc.




All My Symptoms That I Have Accumulated Over The Past 4 Years

Head/Neurological Symptoms:

Feeling wired/constant stimulation: I feel as though I am on 2 pots of coffee or Adderall all day. This feeling never leaves and was one of my first symptoms.

Brain fog. I have a hard time remembering things: My memory is not as sharp or clear. My cognition is not as strong as it once was. I am unable to process as fast as I once did. Inability to handle as much work as I once did. Feeling of information overload easily. Can’t handle tasks, work assignments with ease. Usually when I go to park my car I must put a flag in my GPS because I can neve remember where I park my car.

Forgetfulness. Difficulties with finding the correct word to say.

Twitching in inner ear: This has occurred in both ears. Usually only happens when I am overly stressed. Happens in both ears.

Nervous system hypersensitivity: If I think one bad thought for only a few seconds, it will cause my heart to race. It is though I have loss tolerance to deal with stress or stressful situations. My bodies stress response greatly over reacts now.

Chronic insomnia: One of my first symptoms that has still not gone away. Continues to get worse. As the insomnia gets worse usually the heart race/contracts get worse as well. Mostly inability to sleep but also inability to maintain restful sleep as well as have a full night’s sleep. I also have very vivid dreams. I believe the vivid dreams are due to my medication but vivid dreams will also increase if my seep is lighter than normal. If I am very stressed and have not gotten god sleep, I will have a very hard time falling asleep due to hypnic jerks. Right as a get into light sleep state I will get hypnic jerk after hypnic jerk and will have to stop trying to sleep. Luckily this has not happened in a while. On nights where I am very stressed and cannot fall asleep, I will usually go into a very light sleep with extremely vivid dreams. The dreams are so vivid that I will wake up and feel a burning aching sensation in head.

Chronic hiccups that are on an off every day: Stress and walking around triggers or exacerbates hiccups

Eyes: Eyes will get dry but only get dry at night and when I am a little bit stressed.

·         Also, will get eye aches in back of eyes.

·         If I stare at light bulb or a somewhat bright light I will get a very vivid afterimage of that light and its shape in my head when I close my eyes.

·         Eye floater: Brief period in time a few years ago during all this when I would have eye floaters appear in eyes pretty consistently. this symptom has stopped luckily. Have been to optometrist and they did not see any issues.



Numbness/Tingling Popping/Aching Sensation’s: Specifically, in lower legs.

Restlessness: I seem to be restless when I am studying, doing work, stress out. Restlessness is in the legs mostly. Had vent happen to me at school where I may have experienced akathisia. Constant pacing back and forth which sent me to hospital.

Heat Intolerance: Have a hard time being out in the heat. If it is 80 degrees, it feels like 100 degrees to me. I will also feel faint as well.

Sweating Difficulties: I don’t seem to perspire as much as I once did. Usually when it is very hot out I will sweat a lot, when it gets into the 90’s (temperature wise) I don’t sweat as much as I did. I will only perspire a little.

Headaches: I have had sharp headaches that would only last for a second. Possibly ice pick headaches). This would come and go. I am having headaches now that feel like head pressure fullness, accompanied with heart palpitations.

Vision Issues: Vision seems off as though things do not seem real, this has stayed with me permanently. Could possibly be derealization.

Myoclonic/Hypnic Jerks: this has not occurred in a while but use to occur during the beginning stages and when I was overly stressed out. Would only occur at night.

Overall body weakness: This will occasionally happen when I am stressed or if I laugh. I have also noticed that when I laugh that I will get weak and slouch a little (possible cataplexy maybe?).

 Depressant/Sedative drugs are less effective.


Chest/Cardiovascular and Circulation Symptoms:

Chest Pain: Occurs on left side more often now but happens on right side as well as middle now.

Heart Palpitations/Abnormal Rhythms: I have forced beats/ contractions which are sometimes mildly painful. I also have skipped beats. Seems to occur mostly when I am agitated/or scared even though currently my heart contracts are more forceful now and can feel it most of the day.

Changes in heart rate due to position changes: Heartrate will increase and contract harder when laying to upon standing. When I am in bed and I turn to my right or left my heart rate will increase. When I stretch my arms over my head my heart beats rapidly now.  I have seen heart rate fluctuates anywhere from 10 bpm-50bpm when changing position, lying, standing etc.  and it is very noticeable. My heart never use to do this before. This has gotten worse over the years.

Exercise Intolerance: I cannot exercise like I once did. As my symptoms progress the exercise intolerance worsens. I feel fatigued when I work out.  

Heart Rate Overcompensation: I must be careful not to get too happy or too upset or else my heart rate will increase and contract very hard. Cannot handle both positive or negative stressors anymore.  Must also be careful when thinking certain thoughts. Thoughts that elicit either excitement or anger will send my sympathetic nervous system into overdrive.  I feel as though I am running a marathon even though I am just doing nothing. My heart and nervous system seems to overexert itself for no reason. Feel as though my sympathetic nervous system is stuck in gear and can’t turn it off.  Heart rate contracts very hard during sex/ masturbation. If I have sex/ masturbate at night I cannot fall asleep as my heart rate will beat too fast and hard. I think that these 2 acts are irritating nervous system/ heart too much the point where it will prevent my body from resting.

Circulation Issues: Arms go numb easily when either typing or if I am lying down going to sleep. Buttocks will go numb usually after 5 minutes of sitting down. Hand will sometimes go numb after 5 minutes of typing. Usually limbs will go numb due to positional changes but keep in mind I am sitting/ sleeping as I normally would and am not in different positons as previously was. Ears will go numb when resting head on pillow.

·         When overly stressed have noticed complete arm numbness and aching as If circulation has been completely cut off.

·         Temperature differences within extremities. Occasionally one hand/ arm will be body temperature and the other will be cold and vice versa.

·         Facial flushing. Facial flushing happens more and more often now. Accompanied with head pressure/ fullness.

Presyncope/Orthostatic Intolerance: I would occasionally have this happen and occurred more throughout the beginning of my onset.

Presycnope feeling while talking: When standing up and talk sometimes I get a gray out of vision slightly and dizziness. This symptom happens more towards the beginning of my illness. I do not experience this now.

Shortness of breath when waking up stairs or when anxiety/ stress comes on


Gastrointestinal Symptoms:

Constipation: Initially happened in the beginning.

Diarrhea: Initially happened in the beginning.

Upset stomach

Stomach Bloating: Stomach would protrude outward. Giving me a bloated look. This symptom happened in the beginning of my onset

Peristalsis Problems: There are occasions when food will travel down my throat at a much slower rate.  

Stomach Pain: Will have this stomach pain that feels like a stretching or pulling/ tearing sensation. Please do not get it confused with nausea/ upset stomachs sensations which I have had before as well.


Muscle twitches: Muscle twitches happen all over body not at one specific point. Will usually be brought on during stress but started occurring during the onset of illness.



Agitation: Gets worse when I have a lot on my mind/have a lot of work to do.


Racing thoughts


Please keep in mind that a lot of these symptoms wax and wane and I usually always get a new bout of unique symptoms as time goes on. Also keep in mind right now that my chief symptoms/  most debilitating symptoms are primarily the palpitations, the wired feeling (like being on a pot of coffee), facial flushing, head pressure, tachycardia a due to positional changes and emotional stimulus and insomnia are my main symptoms.   




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I think the hiccuping is a particularly interesting symptom.  It sure hints at something awry with the vagal nerve.  It seems that stress severely exacerbates your symptoms.  Since the onset of your symptoms, have you had a time of sleeping well and low stress?  Please don't take that as a suggestion that all of your symptoms are only caused by stress, but rather, seeing if you can compare how much change you experience in physical symptoms when you are well-rested (consistently over months) and relaxed (also consistently over months).  

Stress and poor sleep aggravate my POTS dramatically and it takes a good bit of self-care, sleep, daytime rest, and conscious relaxation to recover.  Sometimes weeks.  And by "rest" I mean physical AND mental rest.  No social media, no TV, no radio, no music with words or strong emotion, no news, no phone ringing, no alarms, no appointments, and minimizing every possible decision and responsibility.

When I'm recovering from a POTS flare, I don't cook, shop, socialize, no activities for my kids, I avoid cleaning or only do cleaning that I can do sitting or lying down.  In the past, I was in a constant state of flared symptoms.  Now with very-very-low stress lifestyle, I recover from small flareups in a week or so and big ones in a couple months.  Low stress and good sleep don't remove my POTS symptoms, but it makes them barely noticeable in between flareups.

Whatever your diagnosis ends up being, you are the only person who can ensure that you do the self-care necessary to feel well.  Give super-low-stress a try and see what happens. You may be able to narrow down your symptom list and have greater clarity in your diagnosis and treatment plan.

Please stay around and update us as you continue to explore what helps you feel better.

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Wow I am not sure where to start. I guess I will start with I am sorry your health is so poor. I am not sure I could have pushed through that many symptoms for so long. I think I would start with a vaction. ;) have you tried to find a doctor that specializes in dysautonomia?  It kind of sounds like your PCP is willing to work with you. Have they seen your detailed list like you posted here? I know they only seem to ever want the number 1 problem, but if you can find a doc that will look at your body as a whole it may help. I wish you luck and hope you find answers soon.

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Thanks for the info guys. The only thing that helps my symptoms is rest relaxation and no stress. I remember briefly I had a period of a few weeks where I felt almost like myself where the only symptoms I had were insomnia and the wired feeling which I have described being the only two symptoms remaining at one point.  I was able to stop the symptoms from flaring because I gave myself time to not worry about my body and things magically got better. I was not having my heart race as I went up the stairs. I am hoping to get to that point now and I am trying to allow myself to rest. Thankfully I am single with no kids which is a big plus. The only stressor right now in my life is work. Thankfully my job provides a good income and it is not really a stressful job at all. The only stress I really endure at my job is having to get up at 7:30am and work until 5pm because my body craves sleep. I should have gave myself time to rest when I got done with school. I graduated college back in August of 2016 and right upon graduating I immediately started looking for jobs because my parents could not support me anymore financially and I was also going to get kicked off my moms health insurance withi the next couple of months being that I was turning 26 so that caused stress within itself. Now that I have finally settled in to my new job I am working with a therapist to practice stress techniques such as mediation which is helping. I plan on seeing a cardiologist at Emory hospital that is knowledgeable on POTS. I have wrote out my full list before and gave it to one specialist at Duke but said that all of my symptoms sounded on specific (I have grown to hate that term so much btw). I will. I am just curious but do either of you work? Right now my biggest fear is not being able to work. I moved from Charlotte to Atlanta and have just taken on a good paying fairly stress free job and it is important to work as I don't have a spouse to financially support me and need health insurance. I have no idea how I would even attempt to get on disability nor would I want to. I am too young and have worked to hard in College to give up what I put in so much effort to do. I hear of some people with POTS not being able to work so that's what I was wondering. But honestly I shouldn't even ask as this will cause me to worry which will only exacerbate my symptoms.  Lastly my PCP said he is willing to work with me and advocate for me but he does not know about POTS. 

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I crash and burn after about 3 months of working.  I'm legally disabled, that determination was made when my symptoms were exacerbated by medications for a misdiagnosis.  I don't receive social security disability benefits anymore because my family is financially secure without and I don't sleep well knowing other people are in much greater need for SS benefits than I am so I requested termination of benefits.  I am a stay at home mom to 2 kids, one of which is homeschooled with exceptional needs.  He keeps me busy and feeling like I have purpose without a typical job.  I have an idea for generating some income within my limitations and have started working towards it.

SS benefits were invaluable because I had access to cognitive behavioral therapy for 3 years.  This has helped me be less reactive to stress.  I'm still reactive, of course, but infinitely better.  I still have the physical POTS symptoms, but I don't have any of the conditioned anxiety or panic that used to affect me.  Relaxation techniques were a HUGE part of therapy.

Based on my personal experience with being extremely reactive to stress and having POTS, I'd suggest adding exercise to your self-care and consider minimalism.

Exercise helps with POTS, with reducing stress, burning off adrenaline, relieving anxieties, and regulates sleep by reducing need for sleep - which may all help you cope with your work schedule.  Many can get around the exercise intolerance of POTS by starting with horizontal exercise.  I can do a full workout on a recumbent elliptical machine, feel awesome, and heart rate stays about 120.  On a regular upright elliptical machine, my heartrate hit 180 within a couple minutes of warmup and I was having presyncope.  Horizontal exercise was a huge eye-opener, and yes, it improved my functioning.  There are exercise protocol available online for POTS patients, starting with horizontal exercise and working towards upright exercise over 6 months.  You might find it helpful?  Gyms can be stressful places - I struggled with exposure to TV at the gym.  Yoga or home exercise may be more beneficial.

Minimalism is an idea that can be pursued with varying intensity.  My interest in minimalism was in simplifying housework since I couldn't keep up with it due to POTS.  Others find they can live very well on much less money - and that pursuit may relieve your stress surrounding working.  Pursuing financial independence might also appeal to your need for security.  I like Mr. Money Mustache blog for inspiration.  Minimalism for me looks like removing unnecessary actions and decisions.  Getting dressed in the morning could seriously stress me out - so I pared down my clothes to the point where I can grab anything without thinking about it.  Standing with my arms up to style my hair can be impossible - so I switched to a haircut that doesn't require styling.  Mealtimes and shopping were stressing me out, so I pared down menu options to 5 or so meals and do most of my shopping online.  My house doesn't look remotely minimalist, but it's simple enough I can clean it up "company ready" in a half hour.  My goal is to minimize enough to be able meet my responsibility to my family within the energy/resources I have on a bad POTS day.

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I have been a stay at home mom for the last 10 years and homeschool both my children, but I just recently started working. I am an administrative assist for a tiny business. The good news is my boss is truely flexible and it is only part time. So if I wake up and it is gonna be a bad day or my sleep was bad the night before I just let him know I am not gonna be there and I come in another day. He has medical issues himself so he knows how it can be. I started working to help my boss out and it gives me something that is mine. Personally I don't think I would qualify at this time for disability because I can function most days. Financially i am ok with my husband working fulltime. My POTS at this point is not nearly as bad as it was last year or even when it started. Once I got my POTS diagnosis it seemed to help me worry less because I knew something was wrong but the doctors wouldn't listen. It drove me crazy. Now I am at the point where I am looking for an underlying cause (I suspect hyperpots). And that takes time to get into specialists. I have a wonderful PCP that knew a little about POTS because she had one other with it and she is helping me to find the specialists I need. You could try bringing some material for your doctor to read up on it so they can kind of understand. I also bought a garmin fitness tracker with hr monitor so if I feel awful I can look at it and decide if it is worth pushing through. That has relieved a lot of stress for me too. It helps that my kids are old enough to help around the house and help me go shopping. I think workinv is possible depending on your will of stubborness and how bad your symptoms are. In theory if you can find the right medicine combination you can feel almost normal. At least for a while.

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I had an idea for you @JSurf125.  When you're feeling unwell with tachycardia,I'd suggest putting ice or very cold water on your face.  Like burying your face in a big ice pack or bowl of ice water.  It's a vagal nerve stimulation that is used to stop episodes of SVT (Supra ventricular tachycardia) and also used to help children end an emotional meltdown.  If your tachycardia stops after putting your face in cold, then you have both a diagnostic clue for your doctors and a useful self-care tool.

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  • 5 months later...
  • 5 weeks later...

Your story is my story.  

Least your symptoms. Have you got anywhere? 

I've after 3 years searching, found out about POTS and Dysautonomia, getting a diagnoses is hard as they first went down the bipolar route, which it turned out not to be, due to like you, a range of symptoms, I match all 40 that i've read on Dysauntomia. 

I just signed up, I just found this post because i've endlessly been searching 'Wired, Stimulated' your: 

Feeling wired/constant stimulation: I feel as though I am on 2 pots of coffee or Adderall all day. This feeling never leaves and was one of my first symptoms.

IS EXACTLYYY (i can't believe this) how i feel ALLLLL DAY, i feel so wired to the moon, no drugs they could chuck at me, Lithium, Benzos, Depokote, Quietapine etc can bring this down... 


So can anyone confirm this is Dysautonomia me and the OP are talking about? 

Also OP,  have you made any head way? 


All the best, hope to hear from you. 



EDIT: wow, your story is mine, down to the Remeron, everything at the start, the weed, the LOT! someone must know. At the start I thought I had Depersonization, now it's just a part of a much bigger picture, this wired thing is not part of that at all, i know from many physiatrists, being on many forums... I now realise Depersonization can appear in POTS. Right now it's this Wired and never needing sleep/fatigue killing me most.. the shakes aren't fun either. I'm also 26!  

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  • 5 months later...
  • 4 weeks later...

Hi there,

I am also curious as to how your situation turned out. Did you find anything to relieve your insomnia/tired but wired symptoms?

my story also included high stress and sudden overnight onset after using weed. And a lot of my symptoms are the same.



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I was a weed smoker for years so this is actually quite interesting.  I can't touch the stuff now --- which makes me very sad because it was how I was dealing with my anxiety and depression sans pharmaceuticals.  I literally used to love the stuff.  My neuro said my dysautonomia is post-infection but I am trying to think outside the box a little because I once heard that sometimes, weed, if it's not cultivated properly, can get mold.  And I often wonder if I had a bad batch (I only ever bought medical-grade weed) that had mold on it.  My onset was literally overnight like yours.  I can remember the day and hour I started feeling all of this, and the progression of symptoms that followed.  I would say, however, I was under a lot of stress at that time --- I was commuting 2 hours a day each way to work through a series of buses and trains which nearly killed me.  But I honestly don't have a clue what brought this all on.   There doesn't seem to be a unifying marker or factor.  Everyone's story seems to be different, although, I admit, stress does seem to be somewhat a factor in perhaps tipping everyone's system towards carnage.  I'm new to all of this as well, literally only 3 months into the symptoms, and 1.5 months into a diagnosis.  But it's felt like 3 years and 1.5 years!  I can't believe it's only been 3 months (March 4, 2018) since I've felt this way.  It truly feels like my whole life.  Each day is simply awful --- and I'm only now sort or accepting/lamenting that I'll have to deal with this for life (pending this isn't something much worse).  But we'll see.  Hope you're doing better/would like to know of any updates.



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  • 2 years later...

Hello everyone,

I am looking to revive this old thread to see if anyone has had success in alleviating the symptoms experienced by the OP. I am also having very similar symptoms that have become debilitating especially the insomnia, fatigue, and brain fog. If anyone has advice or a similar experience please reply. Thank you so much.


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