So sick and frustrated - I am a fighter - I refuse to commit suicide but it is looking like my only option

Hello everyone.

My condition has ruined my life. I won't bore you with the details, but let us just say that I am in eternal hell. I am now posting in online forums in hopes of reaching someone that may be able to help, since no Dr. has been able to.

I am 24 years old. For the past 4 years my symptoms have been getting steadily worse. Within this past year my symptoms have become unbearable and are now present 24/7 with no relief whatsoever.

My symptoms are as follows:
Chronic daily pain
Brain fog aka. Cognitive Dysfunction (memory loss, inability to focus and concentrate, trouble reading and comprehending, etc.)
Severe fatigue
Severe head pressure that never goes away
Dizziness (not vertigo) and tinnitus
Unrefreshing sleep
Dull sensory perception
Chronic sinus and nasal inflammation

Symptoms vary throughout the day, yet are always there, and are usually worsened by the following:
Eating anything
Drinking anything (even water)
Standing up (better when lying down)
Waking up in the morning
Ejaculation
Different head positions
Heat

I have had MRIs, MRVs, EEGs, CT scans, blood tests, the works. Everything comes up normal.

I have tried over a dozen migraine medications and none have helped. I do not believe this is a migraine or a headache, since I have had both since I was a child. Migraines will knock me out for 3 days, with visual disturbances, and are treatable with over the counter anti-inflammatory drugs if I catch it within 30 minutes of onset of visual aura. Headaches are also treated with over the counter pain medication.

This is something different! It feels as if my brain is being blocked. I am unable to think straight and feel as if I'm in a dream land 24/7.

There are only 2 things that help:
Fasting (no water and no food) for 48 hours.
High doses of anti-inflammatory drugs (which are not sustainable for obvious health reasons).

I have just had a lumbar puncture and am awaiting the results of the culture and pressure readings. During the procedure the Dr. said my pressure was 22, and was slightly high. I also noticed complete relief of all symptoms for 2 hours after the lumbar puncture, beginning when he first stuck the needle in my back and began draining some of the fluid for testing.

The headache and other symptoms have gotten progressively worse since the lumbar puncture, yet I am unsure if they are a continuation of my previous symptoms or something different entirely.

My Neuro wants to do a blood patch because he says I am now possibly having a CSF leak. If I am leaking, however, why did the lumbar puncture alleviate my headache? Should I not be on Diamox to lower my CSF pressure, if draining the CSF fluid was what alleviated my headache in the first place? Is my headache now a buildup of pressure and not a leak?

I do not want to get a blood patch until I know that is the right move. My Neuro seems to be doing things without having all the necessary data, which I unfortunately do not always give him because I am confused most of the time and unaware of my surroundings. I try to tell him things to the best of my knowledge but can no longer fight for myself and am now looking for answers online.

I should also mention that in the past, the only thing that has helped me is Zithromax. I had 2 days of relief while on 250mg a day, but symptoms returned 2 days after my Z-pack dose was terminated.

Any thoughts, ideas, comments would be more than welcome. I have undergone dozens of tests of different types and everything has come back normal, stating that I am an otherwise healthy 24 year old male. The only other idea I have is cluster headaches, since my pressure in the morning seems to start at 10:38 every morning. If I wake up before this time I often feel fine lying in bed, however if I wake up after this time I wake up in pain.

Thank you for your consideration.

This is a shorter reply than I want to give but it is late and my brain is exhausted from a migraine earlier in the day......but wanted to give you some thoughts off the top of my head (so to speak!). It is a clue I think that your symptoms were better on the antibiotic. I do not know if you are dealing with migraines or not but maybe a chronic sinus infection is causing pressure or inflammation in/on your brain and causing your symptoms. I know for me a sinus infection can trigger my migraines. Have you gone to see an ENT about your symptoms? That might get you more information.

Unfortunately we have to be our own detectives. I know that it is exhausting being on the "medical hamster wheel" and sometimes I need to take a mental health break from the medical profession. It is very important that you keep a diary of your symptoms and that you also take someone with you to your appointments who is well-versed on what you experience day to day. It is very helpful to have a medical advocate who can attest to your symptoms and also stand up for you when you can not articulate what you want or need. Do you have a general physician? Someone who can coordinate all your care is also helpful and that person should be someone you can vent and rant and rave to when you need to let it all out.

I am glad that you found this group - please hang in there and I will try to post again tomorrow. L

I am terribly sorry for all you are going through. I can see how frustrating it must be for you to deal with such unrelenting and unusual symptoms.

I am affraid I cannot be of much help beyond suggesting that if you find that antinflammatories help you, I wonder if your ever considered possibility that you might have one of the auto-immune conditions which are not easy to diagnose (it often takes several years to come across the right doctor, who will make the correct diagnosis).
You might consider asking your Dr to prescribe for you a short course of steroids (very effective antinflammatories) to see if they help with yoru symptoms. A short course of steroids should not produce too many s/e, but taken over a long period of time they need careful supervision.

And if steroids are helpful to you, this might be a good indication that you need to see a specialised doctor who could take test relevant to some autoimmune condtions, starting with ANA (although this can never be 100% certain, it is a good indication of autoimmune condition) as well as to make a full list of your symptoms before s/he can make a diganosis.

Sometimes it is rheumatologists who are best at recognising autoimmune conditions, but some specialised neurologists can diganose some autoimmune conditions (like MS).
You don't say where you live (I live in UK) so I cannot make any suggestions about the right doctor.

You are showing some of the symptoms (mental fog and fatigue are so typical, as well as never feeling rested after sleep, strange sleep patterns etc) which might possibly indicate something like Lupus, a connective tissue disease, fibromylagia or some others (there are quite e few). Start reading about these conditions and see if any of those symptoms aply to you.

Do not give up yet, you are still young and you sound very bright and articualte, despite your brain fog.
I know how horrible it feels when you cannot use your brain power to yor full ability, for whatever reason. You feel like if you were loosing your very identity, I know that feeling. But you are still here, and you are valued. Anyone can tell that you come acorss as someone very clever, and yes, a fighter.
So do not give up, keep fighting for your diagnosis.
I know that at times it must seem like it is too much of an effort, but we care, we want to help, even if we don't know quite how. We are here for you.

Thank you Jewishmother and Mini for your replies. I apologize up front for my lengthy wording, as I too am fighting mental exhaustion and am unable to get the right words out, yet make them concise. I've spent over an hour trying to write this post because I can't remember more than a sentence at a time and have to continuously re-read what I have written to make sure it makes sense.

@Jewishmother
I have had two Endoscopic Sinus Surgeries in the past year for recurrent sinus infections. I have suspected sinus problems all along, however I regularly see an ENT and complain about my symptoms, which he keeps telling me is allergies and that there is nothing to worry about (as if!).

I have had allergy testing done (food and environmental) through blood work and skin-prick tests, both of which I have followed to the letter and still have not had any relief in symptoms.

Regardless of the cause of my sinus and nasal inflammation (never any congestion, just inflammation) I do have to agree with you that this IS sinus related, although I'm not sure if my sinus inflammation is the cause or a symptom of my collection of symptoms. Most of my pain + pressure is localized to the front of my head and face, and always has been. It is just hard to convince an ENT that it is when my sinus cavities always seem to be clear of congestion during the exam. I often doubt myself as well when I am repeatedly told that my sinuses are fine, yet all arrows are still pointing in this direction (that it is still sinus related).

I have often wondered if the cause of my sinus inflammation is due to some sort of migraine, cluster headache, etc. that manifests itself as inflammation, which when chronic leads to bacterial infections due to insufficient air flow. I cannot breathe out of my nose. Regardless, I am undergoing a third sinus surgery in two weeks, this time to open up my frontal sinus cavities, after ENT shopping and finding one that was willing to try something else in an attempt to solve my problem.

I have never had any sort of sinus problems before all of this started.

As for support, my GP has been very understanding and helpful, yet does not help me push for my treatment. I can understand this since he is very busy, which is why my Mother has been my advocate at appointments. She too does not push much because she is not aggressive enough, and much of the fighting has been left up to me when I am physically/mentally able (which is rare, since I spend most of my time in bed in a state of confusion). I now rely on prescription stimulants to get me through the day because without them all I have energy for is sleeping. I am my own advocate, and this is not by choice.

@Mini
I have been to countless Drs. for all sorts of conditions, and it seems the only type I have not been to is a Rheumatologist. Thank you for this suggestion. I have often wondered if this is some sort of autoimmune disease and have asked several Drs. for tests to confirm/deny them but have been meeting resistance, since I 'appear to be healthy' as they put it. It's rather disappointing that because I have 120/80 BP and have a natural athletic build without exercising that I am somehow void of health problems from the perspective of 90% of the Doctors I encounter. They seem to ignore my mental health complaints entirely. If a Rheumatologist is usually the best at figuring out conditions such as this then I know the next appointment I am going to make

I live in the United States, specifically the Midwest.

I actually was just prescribed Prednisone (10mg daily) yesterday as an anti-inflammatory by my GP after complaining to him again about sinus inflammation. I'm going to start this tomorrow and see if it helps.

Thank you for your kind words. I feel like my brain is working on 10%, and the rest is just waiting to be unlocked. I have to work very hard at being articulate which would otherwise come very easily. I have been dealing with this for so long that, you're right, I feel as if I am losing my identity. I hope you have gotten better to the point where you are able to live a happier life than when you were in a deep brain fog.

My heart breaks for you, you are too young to have suffered for so long.

I have chronic migraines so I understand being in a constant state of pain, discomfort, and feeling generally "off" all the time. Your story however reminded me a bit of my youngest sister. She is 19 and was very recently diagnosed with fibromyalgia and an auto-immune disorder called APS (Antiphospholipid Antibody Syndrome), which is a clotting disorder. She has had constant, unrelenting pain since she was 13 and had been dismissed for years by doctors. She too couldn't sleep properly and was always tired. She was often nauseated and dizzy. She is losing her hair (she has beautiful red hair). And on and on. She got much worse over the past few years and with my parents as advocates, starting searching for answers.

Her path started with an opthamologist (another good idea if you haven't already seen one, they can think of things that other doctors may not) because she had lost her vision in one eye on a few occasions. (It's happened to me too, but mine is caused by migraine.) Her foot and leg would also go numb on a far too frequent basis, causing her to fall. Her opthamologist happened to be familiar with APS and recognized the symptoms and sent her for a blood test which of course, came back positive. From there, she was sent to a rheumatologist to confirm the diagnosis. He did and then he confirmed that she also had fibromyalgia (which was the reason for most of her pain). A great neurologist was added to the mix and they now want to test her for something called Transverse Myelitis, which is a disease that mimics MS in its symptoms, but is not degenerative (she will need a spinal tap for them to confirm).

All of this to say that in my experience, which includes managing my own chronic migraines as well as watching my sister, you have to keep searching until you find the right doctor who thinks of that one thing that somebody else didn't. Definitely find a good rheumatologist and try and find an opthamologist in the meantime. Don't give up until you get your answers. That's what I always told my sister too. In your case, you need to continue being your own advocate, no matter how hard it may be. Write everything down that happens every day. Every symptom, what you ate, how badly you hurt, every drug you took and how much and anything that could be a trigger (even if it feels too obvious or far fetched). Take that information with you to every appointment you have. Trust me, that helps you build a tremendous amount of credibility with doctors very quickly.

Best of luck, please stay in touch and let me know how you're doing.

Sorry, just one more thought. Don't be afraid to seek second, third and fourth opinions if you think you have to, even within the same specialty. I have been to countless doctors and have had tests, scans, etc. to rule out what may have been the problem (auto-immune, MS, fibro, psychological, etc.) Now I know with certainty that all of my symptoms are related to migraine. Most of the doctors I've been referred to have been the result of me finding the specialist myself and then giving my family doctor the fax number and telling (not asking) him to refer me.

Good luck and be well...

Freddy - I'm so sorry to hear you are having so many problems. Many on here have the same chronic pain and we have a hard time dealing with it. I understand the feeling of wanting to end it all. Believe me, I do.

Without going into detail, let me just tell you that I have had fairly frequent migraines (1-2 a month) much of my life. It suddenly changed, along with many other changes in my health, about 20 years ago. Two years ago I finally found out I have Lyme disease. As I'm going through treatment the other symptoms are somewhat better and the migraines are a little better. Some antibiotics can even make it worse but then better. Lyme disease mimics Lupus and ALS and other neurological diseases in its symptoms and often goes untreated. I've been to 5 neurologists and none of them tested me for it. It's just a thought.

Good luck. I hope you find something that helps. Just know that you are not alone. - Cathy

Hi,

A few more checks.

If you are autoimmune, steriods may help if it is a connective tissue disease like lupus, but if something like thyroid under attack, no they won't.

Check your medical records for ANA (antinuclear antibodies - non-specific evidence of autoimmunity) and thyroid antibodies, (not just TSH). A raised ANA is a starting point for many autoimmune diseases and it will still take someone clever to spot the problem like Feddy's sister but it is a start.

Take your temperature before you get out of bed in the morning. If consistantly low you may have thyroid/adrenal problem.

Check your total allergy counts - IGE IGG. If you feel better if you don't eat, this is telling of an allergy. Prick tests and blood tests for a specific allergen may not be the allergy you have. The broader tests may be more revealing as proof that something is a trigger.

Check your mri results yourself. Do they give any indication of anything abnormal at all. Sometimes small items are dismissed on reports which are in fact relevant.

This goes for all blood tests as well. Try and get copies of every test you have ever had. If possible put all results on a spread sheet - anything going up or down, anything within range but only just. Doctors will dismiss a test only 1 point out from being under/over. The ranges are guides only - you may feel awful even if you are only marginally short of something because you are you.

Space your medications and suppliments several hours apart. Make sure you have no contridications in your medications.

This is my standard "check list" I suggest to friends in trouble. Basically it comes down to being your own advocate and once you take on this role, learning everything you can. It may make no difference whatsoever, but it gives a lot more confidence in dealing with doctors, and a lot more knowledge to either embrace or reject treatments and diagnosis.

Take care and good luck.

I agree with the others you should keep trying things. The meds all did not work for me either.

Your description of a general mental fog resonates. I am seeing considerable improvement in headaches, mental functioning and clarity with the hormonal, adrenal, thyroid supplements I'm currently trying. Try seeing a naturalpathic doctor to get proper blood tests. It takes about 3 months to see full effects. I overall feel much better and have better energy as well.

Update: I am still waiting for my appointment for autoimmune testing.

Hi everyone. If you are still following this thread I have some good/bad news:

Good:
The headache is CURED. It was a CSF leak that I must have received a long time ago.

However....

the BAD:
My cognitive decline, head pressure, dizziness, and every other symptom I have been experiencing FOR YEARS is STILL THERE. The blood patch only cured the pain, but the rest of my problems must be found elsewhere.

I now know what the cause of all my suffering is: FOOD. I do not know why this is though. After going gluten free, and even trying the gluten free diet for several months in the past, it seems that nearly every food I ingest bothers me. Fasting (no food or drink) for 48 hours still helps, and even breaking the fast with a stir fry of olive oil and zucchini, or even plain old carrots, causes all symptoms to return. How could carrots cause dizziness, extreme lethargy, and a drunk-like sensation IMMEDIATELY after eating. This isn't something that happens minutes or hours down the road, but after my second bite!

Carrots are not even on my food intolerance list, so what gives?

Food is doing something to my body but it is not a histamine reaction. I am even on an antihistamine right now and still experiencing this drunk-like symptoms. I have also had allergies in the past and the most I would get was watery eyes and some hives on occasion. Now, however, I get no itchy eyes, no hives, no itchy skin, no sneezing, etc. but all I have is cognitive decline.

Does anyone know how food could be causing my symptoms? It's almost as if when I eat someone gives me a shot of horse tranquilizer before I'm even able to swallow the second bite.

Thank you in advance, still trying to fight this thing and become healthy so I can enjoy my life for once!