New here! My story so far...

New here, let me introduce myself šŸ¤
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Hi everyone,

Iā€™ve watched this forum for a short while now. I wanted to introduce myself, tell my story so far and where Iā€™m at now, as well as ask for some advice. Sorry if itā€™s a little longā€¦

For 15 months now I have had symptoms including, a 24/7 feeling of light pressure in my head (does vary in intensity) a sense of detachment from my body, derealization, dizziness (but no spinning, more a floating sensation). Other side effects I have developed over this time due to my symptoms, include social anxiety (something which is the complete opposite of my usual self) and at one point depression although at the moment I am not as low as I was. My symptoms also get worse with activity such as tennis/football, I am able to go to the gym though.

This all started last summer when I went cliff jumping (about 10 meters) in the south of France. I only did two jumps and landed perfectly straight. Later that evening I started to become ill, feeling unwell, diarrhea and a headache. Ever since then, I have had the symptoms as previously listed.

About three weeks afterwards, I went to a hospital and had a scan where I was told that I had an infection of the sphenoid sinus in the middle of the head. I took a two week course or antibiotics and felt perfectly normal again. Once I stopped the antibiotics however, the symptoms returned. I went on to have a further 3 courses of antibiotics, each time getting rid of my symptoms until I came off them. After going back to the original hospital again, they performed some balance tests and told me that there is nothing wrong with me and that the first scan they did for me was completely normal (even though they first told me otherwise).
I then went to see an ENT who asked for another scan to be done. The radiographer left notes saying I had a foamy build up in the sphenoid sinus (similar to the first scan) but the ENT said that it was nothing and the scan was normal.

I went on to have blood tests which came back normal, see a physiotherapist for pressure point release and had acupuncture therapy. All to no avail.

After seeing a new ENT and telling him about the previously reported sinus infection which I was sure at the time must be the problem, I was put on a 6 week course of antibiotics. This time however, the antibiotics did nothing. A later scan showed everything was completely normal.

This takes us to where I am now. I had a phone consultation with a neurologist who diagnosed me with chronic tension headaches. I found this funny because nothing about my symptoms resemble the usual headaches experienced by many. I have been put on amitriptyline with a few other drugs to try if unsuccessful.
Iā€™ve now been on amitriptyline for 2 months and am also a couple weeks into the ā€˜heal your headache dietā€™. Started at 25mg and titrated up every two weeks until on 75mg, my current dosage. The amitriptyline has made me realize that sleep is a massive trigger for me. Iā€™m not usually a good sleeper but have slept like a baby on ami and in turn my symptoms when I wake up are not as bad, while before my head pressure was the first thing I noticed in the mornings. I am pretty sure this is due to sleep rather than the ami as on the few nights I havenā€™t slept well, the pressure in my head returns with more intensity.

The other drugs lined up by my neurologist are propranolol, topiramate and nortriptyline.

Iā€™m currently at the point where although there are some benefits due to better sleep on ami, it just isnā€™t working. I still have all the original symptoms and itā€™s been two months now. Do you think I should move on to a new drug? I know no one here is a doctor but I really value your thoughts as you all have so much experience dealing with similar things.

If you made it this far, thank you for taking the time to read it :slightly_smiling_face:

Jared

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Hi and welcome. So to get this straight the current diagnosis is Chronic Tension Headaches and since starting Ami you have noticed a lack of sleep causes you to awake with head pressure? Have I got this right?

Maybe more questions than answers but my wandering thoughts might just push your thinking in the right direction. After all you know your body, symptoms and history better than anybody else.

Various ways to look at this. I have read Chronic Tension Headaches are usually treated with a tricyclic antidepressant, generally Amitriptyline. Two months? Maybe not quite long enough? None too sure about that. Up to four months recommended for chance of effect with migraine preventatives for sure. As you are only on 75mg it might be possible a slight increase would be in order. However as you have seen improvement maybe you should stick with it but also ook at more of a migraine protocol such as Diet and Trigger Avoidance. I am unsure of how close the connection with migraine may be of perhaps there isnā€™t one. Might be worth checking out with the specialist. I know for sure that Chronic Daily Headache is accepted as being on the migraine spectrum. Not sure whether same applies to the tension type. They were absolutely sure weā€™re they? Did they give reasons why it couldnā€™t be migraine? What are all the original symptoms you still have?

You say ā€˜it isnā€™t workingā€™. What expectations were you given? None I suspect. Bar is actually set pretty low for preventatives. A 50% reduction in severity, frequency and duration is deemed a success. And it could be at two months yet you have still not reaped maximum benefit. I am not as familiar with tension headaches as with the migraineous types but know they tend to be very stress related and am sure establishing a good sleep hygiene routine (standard headache procedure) will reduce symptoms where lack of sleep proves a trigger as you have now noticed, so itā€™s is working. These conditions tend to need a multiple disciplined approach. Itā€™s not just a question if taking meds as you would take painkillers sufficient to knock out the symptoms. The meds increase our tolerance levels to triggers but in order to achieve success we have to increase the meds whilst decreasing the triggers
until they meet in the middle if you follow.

The drugs you list are some of those most commonly used here in UK. If you decide it is time to move on I would ask if it is possible to Add in Propranalol to run concurrently. Itā€™s great for knocking out head pressure which according to a neuro I saw is the headache. Might come as a surprise but headaches come in a wide variety of forms. Some of which can hardly be described as headaches at all. I too have been there. Helen

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Hi Helen,

Thanks for your detailed reply! :slightly_smiling_face: To clarify, yes that is correct. Although regardless if I sleep well or not I will still have symptoms 24/7 throughout the day. I have just noticed that sleeping well results in less intense symptoms when I wake. I know I have never been a great sleeper but noticed a huge difference in quality of sleep on ami. When I say pressure, it is not pain (painkillers do nothing for the symptoms). Itā€™s like my head has been filled with air. Alongside this feeling of ā€˜pressureā€™ the other symptoms I still have, include a spaced out feeling and a detachment from my body. This is particularly noticeable when walking. Itā€™s like a floating feeling and my centre of consciousness feels like it has moved. I never feel like I am going to fall but walking feels particularly strange.

In regards to the diagnosis, I find it hard to take anything with absolute certainty as I have had this for 14 months now and everything I have been told by specialists has turned out later to be wrong. She told me that stress was a factor, although when I first got this I was in one of my best years yet. I had just moved to sunny Montpellier for a new job that was going great. Of course, an element of stress has definitely entered my life as a result of these symptoms and how much they have changed my life for the worse. She did seem to think that the infection in the middle of my head started these symptoms and while the infection was eliminated, the symptoms continued. She didnā€™t give any reason for it not being migraine, although I didnā€™t ask. I have only recently found this forum and been open to the possibility of MAV or migraine myself. A lot of the medication I have been recommended seems similar to medication regularly talked about on here. I have read the ā€˜Heal your Headache dietā€™ and been on the diet for 2 weeks now.

In answer to expectation I was given. You are correct, none! I was hopeful that I would start medication and I would finally be rid of these symptoms for good. I have been very strict recently with regards to triggers to maximize improvement but still the only improvement is if I sleep incredibly well that the pressure sensation is not as strong when I wake. All the other symptoms of ā€˜dizzinessā€™, feeling spaced out and detached from my body have not improved at all and these are the symptoms that bother me the most.

Thank you for your recommendation. I guess I will stay on it a while longer. As for the propranolol, I will make that suggestion next time I speak to my doctor. I really wasnā€™t sure which medication to go for next, kind of feels like a lucky dip! So thank you :slightly_smiling_face:

I have been on two different brand names for amitriptyline because my first prescription was in the UK, second in France and then back to the UK for the third. One interesting thing I have noticed is when I switch brand, I donā€™t sleep as well for 5 days or so and result in worse days. I have currently switched brand a few days ago and am going through this at the moment. I donā€™t know if you know anyone who has had a similar experience?

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You have obviously been reading up in it. Do you suspect itā€™s MAV? Do you have history of migraine/family history of same maybe? Would that be possible? Just assume for a minute the court jumping incident was a complete Red Herring and think it through as possible Migraine Associated Vertigo. Does it make sense? Then of in fact either way you need to see a medic. Neurologist or Neuro-otologist rather than ENT because you really do need a diagnosis. Whatever it turns out to be MAV or some trauma to the brain such things tend to hang around long-term and to need medication and treatment. Best starting point is a firmer diagnosis which also has to be meaningful to you because itā€™s you thatā€™s stuck with it Iā€™m afraid.

Not medical me but the fact meds for MAV and whatever you are supposed to have by current diagnosis being the same are just indicative that they are capable of masking symptoms so as to improve quality of life as an oversensitive vestibular system has a chance to settle. Vestibular conditions rarely have cures. Just treatments to dampen symptoms. I remember thinking much as you did that once I was on preventatives it would all go away for good. IMO In your case if it does turn out to have been trauma related you do stand a far greater chance of losing it completely eventually than if it is coming from a longstanding migraine background.

When it comes to different brands thatā€™s a common experience. If you use the Search facility on here you should find many instances my own included. Helen

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Iā€™m not really sure what I think. It was actually a neurologist who gave the diagnosis of chronic tension headaches and not an ENT. Iā€™ve read a lot about MAV, PPPD and chronic tension headaches and a lot of the symptoms just seem to blur into each other. The main reason I felt a bit unsure about this diagnosis was that she told me this was probably due to stress which didnā€™t really align with my mental state when symptoms first began to show. My life was virtually stress free. Yes, my mum tells me that migraine runs through her side of the family. Nothing like I have been experiencing but I guess it can affect us all differently.

Thank you for all your input!

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Itā€™s best to give it 3 months on a particular drug (and dose). If you tolerate Ami well and it helps you sleep I would keep using it but try to add other parallel treatments. Check with your doctor but Propanolol should be able to be taken with Ami (I take them both currently). If not, maybe start a low dose Propanolol as you come off Ami. I would also look into getting a Cefaly device. Finally, I would ask your doctor to try sumatriptan on bad head pressure days. I started with a small dose (25mg) first and now take 50mg at a time.

Good job with the diet too, it can be helpful when things are really chronic. Good luck, I wish you well.

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I had never heard of a Cefaly device before until now. After reading up on them I think I will give it a go.

Thank you for your comment @ander454

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Thank you for sharing, I wish you well and welcome here.

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