Invest in ME Conference 12: First Class in Every Way
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New Daily Persistent Headache, treatment and causes

Discussion in 'Pain and Inflammation' started by joe12, Jun 5, 2015.

  1. joe12

    joe12 Senior Member

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    I have suffered from a constant daily burning pain on my nasal mucosal area, around my eyes with lots of photophobia. Only recently did I find the correct diagnostic name, which is new daily persistent headache, despite going to a few neurologists.

    The pain started around the beginning of 2009 after some hear palpitations left my almost unconscious for a few seconds. Before this I was feeling very sick, had flu like symptoms, high blood pressure, and sinus congestion that would no clear. I think a few months before I was developing hashimotos with hyperthyroid symptoms. Then I used a product that alters the lipid metabolism thru the liver which is called Hidroxycut, the first formula that had (garcina gambogia, gymnema sylvestre, phosphatidylserine, rhodiola rosea, green tea, caffeine anhydrous, white tea, and oolong tea). So this things was loaded with a of metabolic altering compounds, not safe at all. A few monts later I still have elevated liver enzymes.

    I only used this thing for two weeks or less after I noticed it was very dangerous.

    After stopping it I got a rheumatic fever erythema mark on my neck that lasted for about three months.

    Right now I am trying to find answers and solutions or treatments for this terrible condition. Most people that get this headache report they start with a sinus infection or some other flu symptoms. The headache comes out of nowhere and it never stops, so usually people remember the exact date. Common treatments include tricyclic antidepressants, anti-seizure, and anti-inflammatory drugs. In my case I cannot use the tricyclic becase of heart problems, I might try pamelor to see if its better but I don't have much hope. Anti-seizure are mostly out of the possibilities because of their many side-effects including long term brain damage and an even lower level of energy.

    I believe the problem is inflammatory, immune mediated, likely triggered by some viral or bacterial infection that could have changed the gene expression of nerves or of some immune cells. It could be a continuous infection of viruses or bacteria or something else, or it could be auto-immune. I personally don't show signs of an infection but of inflammation and since it started with the hashimotos I bet there is a strong connection that I cannot find. I really need a lot of help to find whats going on and haven't found any helpful doctors so far. Since I am not very interested in pain medication neurologists are mostly out the question unless they offer other solutions, maybe something like aprepitant nk1 antagonist, but thats very expensive.

    I recently tested various herpes viruses since I am recently loosing vision on my right eye due to some kind of increased inflammation after using predisolone drops after getting itchy eyes and more visual floaters after a viral infection with influenza. The itchiness and pain persists, particularly on my right eye, it feels like something is not right and as if its injured with pain around and behind, and blurry vision.
     
  2. sarah darwins

    sarah darwins I told you I was ill

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    I wouldn't dare venture any comment on your symptoms (other than wishing you a recovery), but a question occurs. You list some of the things you've tried taking. Have you tried cutting things out?

    If there is any persistent sinus infection involved, dairy and gluten both seem to have the potential to contribute to problems in that area. I got great relief from awful sinus congestion, pain and headaches when I went gluten-free. I've recently cut right back on dairy and that's helped, too.
     
  3. joe12

    joe12 Senior Member

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    I did cut dairy out and it seemed to help a bit with the nasal congestion but not much with the pain. I also stopped wheat for a while and the only difference I noticed was with better digestion.

    I am looking very desperately to find some kind of treatment that isn't based on just blocking the nerve signals. For example, I read a person who after using anti-seizure medications for various years it caused some irreversible visual symptoms, I guess from nerve damage. I believe my problem is infectious or inflammatory/immune yet so far anti-inflammatory medications don't help much, some antibiotics have reduced the sinus inflammation thou, but I think I will need better ones.

    I am thinking about testing my neutrophil oxidative burst since thats what makes mucus green and kill many bacteria. I don't have the symptoms for granulomatous disease thou, but maybe I have some degree of low function, who knows, I'm confused.
     
  4. Valentijn

    Valentijn Senior Member

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    @joe12 - Have you tried fish oil? 3 grams throughout the day keeps my headache away. It takes about 12-24 hours to start working for me, and the headache comes back after 24 hours if I stop taking the fish oil. I take high EPA and DHA oil ... fish liver oil isn't appropriate because of the excess of vitamin A.
     
    Last edited: Jun 7, 2015
  5. bertiedog

    bertiedog Senior Member

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    @Valentijn Do you take the fish oil in one dose and is that first thing in the morning?

    Thanks
    Pam
     
  6. Valentijn

    Valentijn Senior Member

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    No, I take it in three doses. First thing in the morning, early afternoon, and shortly before bedtime.
     
  7. GONZ0hunter

    GONZ0hunter

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    Could be midline facial pain. I had the sinus pain thing post fess, it made my photophobia worse and also triggers some migraines.

    I found my daily headaches were caused by central apnea.

    I have immune issues that cause constant sinus infections. I am not sure it's connected to mid line facial pain but who knows.
     
  8. joe12

    joe12 Senior Member

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    Do you know your specific immune problem? I know my problem is likely inflammatory because of the high quantity of eye floaters. I was not given an explanation for the eye floaters by a specialist, only that its likely caused by some degradation and its uncommon to have them at my age.

    The problem is the inflammation is not "cured" by nsaid's or steroids, in fact a steroid eye drop made my condition significantly worse on my right eye, I have no idea why, by I guess one possibility is that the cause has been an infection difficult to detect.

    I am considering to test neutrophil oxidation and I would like to find out what test could I get for macrophages.
     
  9. GONZ0hunter

    GONZ0hunter

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    I have a primary immune dysfunction disorder. Selective ige subclass 3 with no response to a vaccine challenge. I am currently receiving ivig infusions.

    I hope they solve your visions issues. My blog on here has the start of my story if your interested .
     
  10. lizw118

    lizw118 Senior Member

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    I have bad frontal sinus headaches for years, which sound kind of similar to your issues, although the symptoms are a little different. I feel like my frontal sinus headaches are autoimmune or immune reactions to lyme or hv2 (I have both), maybe. For me the only thing that helps is pseudoephedrine. Something about the vasoconstriction, I think, helps. That is not a long-term solution though. I wish I had could find an answer.
     
  11. GONZ0hunter

    GONZ0hunter

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    Here is what worked for me.

    1. Astepro and Flonase helps somewhat, but not all the way.

    2.finding a good ent to fix any structural issues. If you are in Colorado I know one. He will do a video scope of your sinuses at the visit and will give you a good, honest assessment.

    3. Find a immunologist who will see you. It took me 2 years to find one who will take me. Selective ige subclass 3 specifically causes issues in sinuses and lungs. They can test to see if you have it. They will then give you a vaccine and recheck your igg levels to see if your body reacts. Mine didn't and I am receiving ivig infusions that have moatly solved my sinus issues.

    Their is a thing called midline facial pain. I have this but am in pain all over as well so it's hard to figure out why
     
    lizw118 likes this.
  12. lizw118

    lizw118 Senior Member

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    One additional thought: have you seen an eye doctor? The reason I ask is that the symptoms you are having in your right eye sound like they could be shingles. My sister had that, and didn't know what it was. The eye doctor diagnosed it. There are some new stem cell treatments you can try if you do have shingles. It sounds like you have additional stuff happening too, and if it is shingles, it would be secondary to the other stuff. I am sorry you are going through this.
     
  13. joe12

    joe12 Senior Member

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    Its unlikely to be shingles. I had a zoster test done recently, and unless it was done wrong, I supposedly have never had zoster, which is odd since I remember having some kind of itchy blisters outbreak and being very sick from this when I was a kid.

    However, I now think its caused by some process causing chronic high levels of reactive oxygen species or some other kinds of oxidative molecules. The question is what, how to find out, and what to do about it.
     
    lizw118 likes this.
  14. evatious

    evatious

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    Hi @ joe12, have your specialists ruled out TED (thyroid eye disease)? I have Graves' disease and when I become hypothyroid I get migraines and subsequent tension headaches straight after the migraines - from holding my head oddly and from the associated muscle tenseness from prolonged pain and inflammation. When I am hyper I get swelling around my eyes (I don't have TED) but do get [slightly] noticeable swelling around the eyes and feel an ache behind the eye socket. I have a lot of inflammation that my doctors put down to the Graves' so I know how many systems thyroid hormones can affect.

    I also get sinus infections on a yearly basis which started in 2004.

    Have you found any answers yet?
     
  15. joe12

    joe12 Senior Member

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    No clear answers, but I think its likely inflammatory, some chronic high levels of ROS changing neurons and tissues around it, likely from a virus that triggered this, but I don't know how it happens, how can I test, what could I do, if its curable, if the damaged axons from nociceptors can be regenerated to stop the pain, I don't know yet.
     
  16. Violeta

    Violeta Senior Member

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    Steroids help pathogens get worse.

    Just remembered that for ROS, coenzymated B2(FMN), and since it's the eye, zinc and Vitamin A in the form of retinyl palmitate.

    Alkaline water from a source such as ECHO is good for neutralizing ROS, and the acidic water that the machines produce is good externally applied around the eye area.

    Olive leaf extract is an excellent antioxdant and antiviral.
     
    Last edited: Sep 12, 2015

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