New Here

New here, let me introduce myself šŸ¤
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Hi Everyone!

I canā€™t believe iā€™ve joined a forum on the internet. Sorry that i am here!

I could go on and on about my story but in short I became ill in October 2016 aged 33. I went from being a ā€˜high achieverā€™, perfectionist to my life being DESTROYED. My gym physique that took years of training has disappeared, my girlfriend of 7.5 years left me, social life has gone to zero and iā€™m struggling to keep my job. Without trying to be dramatic i feel as though iā€™m dead but have been given a front row seat in watching everything iā€™ve created fall apart without the ability to act. Its hell as iā€™m sure you are aware.

I have been reading this forum along with MDUK.org (as Menieres Disease was the diagnosis for the first 18 months) since 2016 and wanted to join being the person to tell everyone how to fix themselves as iā€™m pretty intence and naively thought i could fix myself. Iā€™ve spent anywhere between 5 and 15 hours a day every day consuming information from the internat and books that iā€™ve bought. Iā€™d like to make a post about my thoughts about why this has happened and what i have done so far and what i have tried but for now i have a question for the groupā€¦

Nortriptyline and Amitriptyline both help meā€¦ until the side effect of racing heart sets in after a few days and i get 3 hours of broken sleep per night and feel like death (Taking 10mg in the morning as it ā€˜activatesā€™ me). Is this due to the increased Norepinephrine? Not sure? Is there a medication that someone feels works for them that is a true SSRI and not an SNRI (increase Serotonin but not Norepinephrine simultaneously)?

Regards,
Andy
Birmingham, UK

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Hi, and welcome.

Specific answer to specific question. @emmasaga takes Celexa (citalopram) and has successfully for eight years. She doesnā€™t post often, you could PM her. Otherwise suggest using the search facility for each specific SSRI if thatā€™s your drug of choice. In case you arenā€™t familiar with Dr Hain I attach his flowchart. Helen

Admin: this was a dead link.

Instead go to the support wiki. Thereā€™s a link there: Drug Treatment - Support Wiki šŸ—‚ - mvertigo.org vestibular disorders support forum

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Hi Andy,

Welcome to this lovely bunch! :slightly_smiling_face:
Sorry you have to be hereā€¦

I am afraid I cannot answer your question.
I just wanted to say youā€™ve probably done the best thing in joining this group!! It is full of excellent info alot evidence based but mostly from our own experiences. Welcome and I hope you find the answers youā€™re looking for!

Best wishes Kirsty :+1:t3:

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Hi Andy, welcome to the forum, sorry to hear that youā€™re suffering too. Could you tell us a bit more about your symptoms, medication, diagnosis etc ?
I could really feel your despair and loss as I read about how your life has been impacted. I can relate to the feeling you have of not being fully alive and watching your life from a distance. Like you I lost a lot of things after becoming ill, my marriage broke down six months in. Iā€™m feeling in a better place nowadays but still struggle with the limitations being dizzy places on me.
Hope you find the forum useful, and wish you a good recovery.

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Hi Andy
Sorry that you are a fellow sufferer.
I too had to quit Amitriptyline 10mg after 9 days due to a racing heart. I have since failed a number of meds however I am having great success with EXTENDED RELEASE Venlafaxine- I started at 12.5mg per day and am now at 100mg daily. It is an SNRI however as far as I am aware the reuptake inhibition of norepinephrine only happens with doses of 150mg or higher, it acts only as an SSRI at lower doses. It is one of the recommended meds from Dr. Timothy Hain - he has a lot of detailed info on his website about its mechanism of action

Hain also links to this article

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Hi Andy, like you Nortriptyline caused my heart to race so after 20 days I had to stop. It was definitely helping me. I started Verapamil 120mg for 7 days, tomorrow morning I am scheduled to go up to 240mg daily. No side effects so far, however my internist is having me monitor my BP and heart rate morning and evening. Iā€™m hopeful Verapamil works. Good Luck in your journey!

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Hi guys,

Thanks for the input Kirsty, Helen, Lucy, Karen and Sharon. Much appreciated! My ā€˜experienceā€™ is that everyone reacts differently to medication / everyones shared ā€˜basket of symptomsā€™ are caused by different things so i needed to hone in on people who see similarities to my story.

Helen, Celexa was on my list but further down. Its now in 2nd place and iā€™m hoping a member not posting often can be taken as a good signā€¦

Karen, Venlafaxine has been on my radar since reading posts on here and was going to be the drug i ask for next so iā€™m glad this has come up!

Sharon, Iā€™ve asked for Verapamil before and was told by the doctor that it was a ā€˜powerful drugā€™ and given out mainly for heart issues. I was then put on Inderal and that caused me to become dizzy straight away. I was always in good shape so my heart beat sits around 45-55 so Beta-Blockers arent for me. However Cinnarizine was the first drug i responded to (CCB as you know) and this took my Tinnitus from an 11 out of 10 to a 6 or 7. This then spurred my research into blood flow and led me to go private and check out my heart etc and everything was fine (of course).

Lucy, my symptoms were crazy and it made me look like a hypochondriac and saw me in my local doctors office with 4 doctors refferring to me as a ā€˜mystery caseā€™. After 2 years i almost wanted them to find something even if it was more sinister just to have a target.

October 2016 i had vaccines to go to Thailand (iā€™m not an anti-vaxxerā€¦but the patients health ideally needs to be tip top when taken). They did like 8 inside of 12 days which i felt was too much for my system along with over training, poor diet at the time (rare for me) and lack of sleep for various reasons. After this holiday i had fatigue / legs felt like lead, i felt uninterested in life and i got occassional heart murmurs. December 2016 my heart began to race like i had adrenaline constantly running through my system and this was the last time i enjoyed sleeping! May 2017 im watching the Walking Dead with my gf eating take away chilling out and suddenly the tinnitus started. Thought / hoped it was the tv. Then a wave of extreme sickness started and i thought (wish now) i had food poisoning. Got up to go to the toilet to be sick and fell over and the room started spinning. I was throwing up all night and was dizzy for about 15 hours.

The story goes on a bit but in short these episodes happened more frequently until i was trapped in a constant cycly of vertigo with nystagmus for 1-3 days at a time, in a sleep coma for a day recovering, get half way through the next day and it would begin again. I was put on steroids summer 2018 to stop this which it did. I got my life back for 8 weeks.

To be continued lolā€¦

Diagnosis:
Menieres 2016-2018 Vestibular Migraine 2018 - present

Symptoms:
Tinnitus (Left Ear), Ear Fullness (Left Ear), Neck (Tight, achy, crunchy), Occipital Neuralgia (Left side), Head Pressure, Swollen eyes, Lightheadedness, Dizziness, Vertigo with Nystagmus, Joint pain (everywhere but mainly costochondritis), Chronic fatigue, Severe insomnia (awake 20 plus times a night), parasthesia (arms and back of head) Tremors, Depression (secondary due to situation - fine before), Cold hand and feet, brittle nails (Iā€™d like to know if anyone else noticed this?), Atrial Flutter / Tachycardia, Heartburn feeling, Overall grogginessā€¦

Medications:
BetaHistine (Did Nothing), Stemetil (Did Nothing), Cinnarizine (Reduced headaches and lowered Tinnitus), Prednisolone - 8 days of 40mg (Felt like supermanā€¦with tinnitus), Amitriptyline (Racing heart but felt better / not beaten up in morning), Nortriptyline (Same as Ami), Inderal (Bought on all symptoms straight away - not for me!)

Cheers,
Andy

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Welcome Andy
Sorry that you have had such a horrible time - this is definitely the best forum to join for support, help, advice etc. I was put on Betahistine when they thought I had labyrinthitis but it didnā€™t help much as I reacted to it and just felt nauseated all the time - I did lose some weight though. I was lucky enough to find my way to Dr Surenthiran who diagnosed me straight way and put me on Pizotifen , which seems to suit me as it got rid of the vertigo and nausea. I still have tinnitus which seems to get louder as the day goes on. I have been working in London today and they are screaming at me now. I can cope with this as long as I am not dizzy and sick. I was off work for 6 months but have now been back for a whole academic year - I think the rest from work also helped me to heal. I still have off days and can feel a bit unbalanced sometimes and have the tinnitus most days plus ear and head pressure - I am having a run of that since last week, but I can function , drive work etc again. I have also been on Dr S 's 6 Cā€™s diet since June 2018 and have to stay on it until Sept .
I think I have been luck to find a med that is working for me without too many side effects - weight gain, but I can cope with that. I hope this helps. Jan

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Thanks Jan!

I havenā€™t heard of Pizotifen before so iā€™ll add it to 3rd place after Venlafaxine (1st) and Celexa (2nd) but iā€™m hoping Venlafaxine will work for me and i wonā€™t need to continue to experiment!

Do you have tinnitus in one ear or both?

The first symptom that i had that i noticed was waking up in the morning unrefreshed. I was always a good sleeper and enjoyed going to bed. Never waking during the night and in the morning after a stretch feel restored but i have been in a fog for almost 3 years and i hate it. It sucks all the motivation out of me and i used to have bags of it. I look lazy now. I look at my friends and they have the life i used to have and i canā€™t think of anything but to find something that works for me.

Andy

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All these drugs are powerful drugs designed for other conditions, not MAV except Pizotifen and the new injectables which actually are migraine specific. I cannot imagine Verapamil could be classified as more ā€˜powerfulā€™ than Propranolol (Inderal to some).

Stopped my tinnitus and my 24/7 dizziness and alot of other symptoms. You will find most drugs PILs list ā€˜dizzinessā€™ as a common side effect. With some drugs, Venlafaxine and Pizotifen, side effects recur on each increase which is one reason for increasing low and slow allowing the side effects to settle between each increase. When I was offered Citalopram my GP told me to expect to be worse for at least three weeks before Iā€™d see any improvement. Dizziness was first on the list of side effects on the PIL included with the tablets. Itā€™s strange but nearly every drug that can control dizziness can also cause it. Helen

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The fact that Prednisolone works for you confirms the VM diagnosis. I took Prednisone and was the only time i was 100% normal. Symptoms came back once i stopped the steroids.

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Thanks for the input GetBetter!

Knowing this then Iā€™m inclined to lean towards my initial self diagnosis of ā€˜adrenal fatigueā€™ as the steroids bump up all hormones along with catecholamines which we are all trying to do with the SSRIā€™s.

Can I ask you how you got MAV? Did you feel stressed / burnt out before?

Andy

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Thanks Helen!

The symptoms of MAV are so bad I canā€™t see me lasting weeks getting worse for the hope of sunny uplands. My sleep drops off a cliff to the point Iā€™m getting 3 broken hours a night and after a few days feel delirious.

Your tinnitus was stopped by Inderal? Are you still taking it? Did you have high blood pressure before do you know?

Andy

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Yes super stressed and burnt out before MAV onset

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@Andy - Iā€™m not posting this to criticise you, but to warn you that ā€œAdrenal Fatigueā€ is a junk diagnosis, which I myself once wasted a lot of time believing I had, when I could have been treating my Vestibular Migraines. ā€œAdrenal Fatigueā€ has an intuitiveness about it which alternative practitioners use to scam vulnerable and ill people into undergoing their pseudoscientific ā€˜treatmentsā€™; as is outlined below.

" Adrenal fatigue or hypoadrenia is a term used by alternative medicine providers to suggest that the adrenal glands are exhausted and unable to produce adequate quantities of hormones, primarily cortisol, due to chronic stress or infections.[1] There is no scientific basis for the existence of adrenal fatigue, and the term should not be confused with a number of actual forms of adrenal dysfunction such as adrenal insufficiency or Addisonā€™s disease.[1][2]

The term ā€œadrenal fatigueā€ was invented in 1998 by chiropractor James Wilson and applied to a collection of mostly non-specific symptoms.[1][3]There is no scientific evidence supporting the concept of adrenal fatigue and it is not recognized as a diagnosis by the scientific or medical communities.[1][2] A systematic review found no evidence for the term adrenal fatigue, confirming the consensus among mainstream endocrinologists that it is a myth.[4]

Blood or salivary testing is sometimes offered but there is no evidence that adrenal fatigue exists or can be tested for.[1][3] The concept of adrenal fatigue has given rise to an industry of dietary supplements marketed to treat this condition. These supplements are largely unregulated in the U.S., are ineffective, and in some cases may be dangerous.[3]"

Best wishes,
D

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:man_facepalming:

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Thanks for your message and heads up :+1:

I agree and came to the same conclusion after consuming everything on the internet over the past 2.5 years. I put the term in quotations marks as itā€™s clearly dubious but whatever the phrase is something is clearly going on with the catecholamines which are hormones as well as neurotransmitters? Itā€™s an endocrine issue as well as neurological?
Whether receptor sites have been down regulated or damaged by stress I donā€™t know. The fact we are trying to find drugs that increase serotonin says we either donā€™t make enough or enough isnā€™t being received?

Cheers,
Andy

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Good stuff, mate. Yes, I and many others on this site agree with you that what is commonly called vestibular ā€˜migraineā€™ is likely to be something that is affected by hormonal and other factors as well as neurological ones. I suppose as long as one follows the medication plan theyā€™ve devised for VM/MAV, then it doesnā€™t really matter what the ā€˜root causeā€™ is, so long as we can improve our symptoms.

Iā€™m currently having having some early success with Venlfaxine/Effexor, and would definitely recommend giving it a try.
Best,
D

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Since chronic MAV I had tinnitus constantly in my right ear and occasionally in my left. The Propranolol stopped it eventually but it took months. Just get it very occasionally on a bad day, intermittently in my right ear. Same applied to ear pressure but, fingers crossed, I think thatā€™s gone for good. Since Propranolol Iā€™ve only had one full on put-you-to-bed attack in over three years. Last year pre Propranolol I was having back-to-back attacks. I am certainly still taking it and imagine I may need to stay with it ā€˜for everā€™, or a very long time. My BP was high end of normal. Still is.

Dr Hain, top US expert, states all preventatives take weeks/months to work. Vestibular Symptoms hang on. They donā€™t all clear at once. Things improve slowly with a well tolerated med.

Have you seen a neurologist or is your GP dealing with your issues? With bad attacks might be good idea to see a migraine specialist neuro if you havenā€™t already. From everything Iā€™ve researched over the years usually theyā€™d attack MAV in a young healthy male with anti-convulsants. Hit it really hard. Helen

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Hi Andy
Both ears , but it tends to be worse on the left, which is the ear that has a perforated eardrum. I havenā€™t slept well for years so I am used to feeling foggy and a bit dozy - I think the lack of sleep was another factor that contributed to my MAV issues. I hope that you find the right med - Pizotifen has worked well for me and I have mainly got my life back, but it can make you a bit sleepy to start with although that fades once it is in your system . Plus I have put on a few pounds - unfortunately, but I prefer that to being dizzy etc all the time. Jan