Fluoroquinolone Toxicity and Intracranial Pressure

Several people suffering from fluoroquinolone toxicity have noted that horrible headaches and pressure in their head has been a symptom of fluoroquinolone toxicity. This comment simply sums up what others have said:

“How do you get rid of the head pressure? I can’t concentrate to read. It’s been 16 months, any tips please.”

Additionally, in the post, “Floxies vs. Normals Part 2” Betsy describes her post-flox headaches (and other painful conditions):

“Migraines before were painful. Migraines after are devastating and debilitating. The one I got while on Cipro was the most intense thing I’ve ever experienced. I’ve never had meningitis but the pressure and pain in my head was so excruciatingly painful that I can only imagine it must be similar. I’ve had infrequent migraines my entire life but the floxed ones truly devastate my body leaving me so weak as to be unable to function at all. There is no comparison.”

Unfortunately, these are not two isolated incidents. While not every “floxed” individual suffers from intense headaches (I didn’t), many do, and head pressure/headaches can be both devastating and under-acknowledged symptoms of fluoroquinolone toxicity.

Fluoroquinolones have been linked, through several studies, to pseudotumor cerebri syndrome (PTCS), which manifests as horrible headaches and head pressure. Chandler Marrs, founder of HormonesMatter.com describes PTCS as follows:

“Pseudotumor cerebri, also called intracranial hypertension, is a serious neurological condition marked by excessive cerebral spinal fluid (CSF) induced pressure in the skull. The increased CSF puts pressure around the brain mimicking symptoms of a stroke or a tumor, including severe headache, vision changes, even vision loss, synchronous pulsatile tinnitus (pulse based ringing in the ears described as a whooshing sound), and nausea. Many women (and men) who experience these symptoms are misdiagnosed with migraines or led to believe that it’s ‘all in their head’ – pun intended. If sufficient intracranial pressure builds up other symptoms  develop including sharp nerve pain in the arms, legs, and back, severe neck stiffness, nausea/vomiting, numbness or tingling in hands, feet, and face, depression, exercise intolerance, and memory difficulties. These symptoms occur absent a tumor, hence the name pseudo or false tumor, and absent other disease processes.” (source)

Sound familiar?

A recent study published in the American Academy of Neurology, “Oral fluoroquinolones and risk of secondary pseudotumor cerebri syndrome: Nested case-control study” found that approximately 2,000 of the 6,000 cases of PTCS are related to fluoroquinolone use. That’s ONE THIRD of the cases of PTCS – a disabling and life-altering painful condition. The researchers found that the relative risk of PTCS is 5.6 times higher in recent recipients of fluoroquinolone antibiotics than in non users.

In Intra-cranial Pressure and “Headaches” on FluoroquinoloneThyroid.com, the author describes her experience with post-fluoroquinolone intracranial pressure:

“I don’t know how to describe it other than “pressure”.  It feels like my head could explode, and I especially feel this in my ears.  It’s as if my ear drums are going to blow out with this too.”

She goes on to note that this fluoroquinolone toxicity symptom appears to be related to thyroid hormone and iodine homeostasis, and describes how differing levels of TH and iodine affected her symptoms. (The post, Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection?, gives an overview of the connections between fluoroquinolones and thyroid problems.)

Also linked to in Intra-cranial Pressure and “Headaches” is a horrifying case-study of a 6-month old boy who was given nalidixic acid (the original precursor to the quinolone pharmacore) who suffered from “bulging fontanelle, papilloedema, widening of skull sutures, and vomiting” after being given naladixic acid for treatment of a urinary tract infection. The case-study was published in 1967. Instead of using naladixic acid, we now use fluoroquinolones, which are likely more dangerous than naladixic acid because fluorine was added to them specifically so that the drugs would more deeply penetrate tissues and cells.

Unfortunately, most doctors don’t link head pressure, intense headaches, PTCS, or migraines to fluoroquinolone use more than fifty years after the publishing of the case study noted above. The lack of recognition and connection is disheartening, to say the least. Perhaps with more studies, and more patient-advocates connecting the dots, more physicians will recognize the connections. If headaches, head pressure, migraines, or other related issues are fluoroquinolone toxicity symptoms for you, I suggest that you look at “Oral fluoroquinolones and risk of secondary pseudotumor cerebri syndrome: Nested case-control study” and that you give it to any physicians you’re working with. It is odd, and likely “unheard of” for most physicians and patients alike that fluoroquinolones can increase the risk of PTCS or other head-pressure related illnesses, but the connections are there and documented, and they should be recognized.

Connection – Post-fluoroquinolone headaches may be a result of cerebrospinal fluid leaks. Please see the post, Do Fluoroquinolones Cause Cerebrospinal Fluid Leaks?, for more information on the possible connections between fluoroquinolone toxicity and CFS leaks. Thank you.

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24 thoughts on “Fluoroquinolone Toxicity and Intracranial Pressure

  1. Don Mowers April 30, 2018 at 8:12 am Reply

    Lisa …. Thank you for posting this article. I have reposted where you put it on Facebook too.

    • Lisa April 30, 2018 at 8:54 am Reply

      Thanks, Don!

  2. Ronna April 30, 2018 at 8:17 am Reply

    Thanks Lisa, very interesting. I’m wondering besides the pain can the headaches cause you any more damage. Going for my first IV today to see if it helps. I will get the Meyers Cocktail. Which one helped the most Meyers or Glutathione IV? How often can you get these? Thanks for the articles.

    • Lisa April 30, 2018 at 8:56 am Reply

      Hi Ronna,

      I don’t know if headaches can cause further damage, and I suggest that you ask your doctor or other healing professional that question. I have never heard of headaches doing damage, but I’m really not sure (and am not a doctor).

      I hope that the IVs help! They have helped several “floxies.”

      Regards,
      Lisa

      • Bob Paddock April 30, 2018 at 9:20 am Reply

        If the pressure gets high enough there can be damage. Low pressure can cause damage from braim hitting the inside of the skull.

  3. Dee April 30, 2018 at 8:31 am Reply

    Lisa, I just read your new post and of course appreciate the info. I actually have some head pressure and pulsate tinnitus. I felt totally discouraged after reading this article!! Do we with head pressure and pulsate tinnitus have a chance to recover from these symptoms?? Have others recovered from these symptoms?? I am 11 months out and have improved a lot although still struggling with the tinnitus!! I hope there is a positive in this story that it is possible to heal from the head pressure/tinnutus etc??? It was very disheartening to read. Is there a hopeful side too??!!

    • Lisa April 30, 2018 at 8:53 am Reply

      I’m so sorry, Dee! Unfortunately, I don’t have any answers for this symptom, and the “hope” element is that I hope for connections and acknowledgement. I think that the potential connections between thyroid health/thyroid hormones and these symptoms is interesting, and perhaps healing the thyroid can help to heal these symptoms. I know that people have reported that their tinnitus and head pressure has gotten better with time (and maybe other treatments too). I just don’t have a specific protocol to help you through it. Sorry!

    • Lisa April 30, 2018 at 8:57 am Reply

      Also, Dee, Angela Stanton’s work on curing her migraines through diet adjustments may be helpful. She has a book, and here are some posts she has written – https://www.hormonesmatter.com/author/angela-stanton/.

    • Lisa April 30, 2018 at 9:40 am Reply

      Dee, please see this post and Bob’s comments below too. There are doctors who specialize in CFS leaks, and if these headaches are a result of CFS leaks, there are directions to explore. That, in itself, is hopefully hopeful. https://floxiehope.com/2017/05/09/do-fluoroquinolones-cause-cerebrospinal-fluid-leaks/.

      • Dee April 30, 2018 at 10:45 am Reply

        Lisa. Thank you for getting back to me with this info. I actually don’t have headaches except my first 2-3 months of being floxed. I have had head pressure off and on but mostly the pulsating tinnitus which was associated with the article about that brain condition. I of course associated it with my tinnitus since it is the pulsating kind and possibly overreacted?? You know how sensitive floxies are and being 11 months out and having improved quite a bit a get scared that my last few symptoms, especially the tinnitus will be permanent it is tied to some permanent brain condition!! I still pray for full recovery but as you well know it is a scary and bumpy ride to get there! Reading articles or stories of people that have not recovered very well really adds to the stress of recovering! I have to only read “recovery” stories or it upsets me and consumes me. Some people can handle the medical and scientific articles and research on FQ toxicity but it is terribly scary and hard to read about! I thank you for all that you do for the Floxie community and I want to believe deep down in my heart that “most” people will recover from this nightmare!

  4. joyridingm April 30, 2018 at 8:37 am Reply

    Voming included, for my Sons wedding, all of these symptoms, rough trip. Joy Scott 

    Sent from my Sprint Samsung Galaxy S7.

    • Lisa April 30, 2018 at 8:58 am Reply

      Ugh! I’m so sorry, Joy!

  5. Bob Paddock April 30, 2018 at 9:11 am Reply

    High pressure and low pressure can present as identical symptoms. This makes determining High or Low difficult. Diamox is often given to to see if there are any change in the symptoms.

    Diamox will lower the pressure, marking a high pressure headache better and a low pressure headache worse.

    Karen referred to Diamox as Die In A Box from the nasty side affects.

    • Lisa April 30, 2018 at 9:38 am Reply

      Interesting. Does Diamox have any long-lasting side-effects?

      • Bob Paddock April 30, 2018 at 7:08 pm Reply

        The side effects are not permanent.

        Some say the original symptoms are better to have than the side effects.

  6. Bob Paddock April 30, 2018 at 9:17 am Reply

    Lisa could you reference your article on CSF Leaks someplace in this please? I’m now at a count of 32 people that have told me their their own Leak started after taking Flouquinolone.

    One small battle was won, in that one of the top Leak docs is now asking his new patients if the every took a FQ before their Leak started. Now to get the rest on board…

    • Lisa April 30, 2018 at 9:38 am Reply

      Done. Thank you, Bob! Your advocacy and efforts on behalf of the floxie community, the CFS leak community, and all those in between (more overlap than many realize, and you’re a star for pointing it out) is greatly appreciated!

      Are you interested in writing a guest post about FQs and CFS leaks? If so, please let me know.

  7. Mary April 30, 2018 at 1:19 pm Reply

    I get pressure in my inner ear, very frustrating.

  8. Shirley May 1, 2018 at 4:40 am Reply

    There is plainly written warning about irreversable ( serious possibility of) when taking Cipro from local pharmacy. After I’m already struggling once Again ., to get better from flocked with LEVIQUIN and Cipro from yrs 2013 through 2017 I was prescribed Cipro by phone by Dr. for UTI. Also presently on prednisone. Took pharmacy print out to dr. Yest. 4/30/18. He said dont’t read those Just rarely occurs, if at all, I had already spoke of these FQs adversely effecting me as well as the prednisone? I’m so stressed as I have no support or advocate where I’m presently living . My questions are , where and how to find Dr.s that may help. I’m spending so much on Meds that I usually can’t tolerate. Nerve pain unbearable at times. Much of the day esp. after spending energy to drive Drs get normal things done. One day of motivating. Drs etc. just Drains! Me Sad that people don’t believe how horrid we feel . I am senior citizen who has really aged rapidly since having meds and atmosphere change so . From Florida weather To Michigan . Then Drs being different. I’m desperately looking for help as so many of us are. I have not had a ( Normalish day ) since all began around late 2014 . Hopefully you’ll understand why this is written so sporadically . Hands esp thumbs bad. Really bad as are eyes head ears bones neck just spasm stiffness. Hugely Painful. SFT Best to all of you.

  9. Karen May 2, 2018 at 7:22 pm Reply

    I have also experienced these horrible headaches; they were also accompanied by a nosebleed which seemed to relieve some of the pressure. But my worst symptom that is “left over” from cipro poisoning, besides its destruction of my kneecap, is the sudden immediate outbreak of broken blood vessels in my legs and the sudden development of varicose veins.
    I tell everyone I meet to NEVER take ciprofloxin.

  10. marc boucher May 5, 2018 at 5:32 pm Reply

    I practice meditation and relaxation and I realized that my brain was very tense in situations even quiet
    By observing this tension well, I believe that articular muscle pain arises from this cerebral tension.
    I had noticed that in moments very depressed by the pain I had come out and had drunk a lot and I had started to dance quietly and finally energetically a lot and I wondered how it was he that I had not broken in two, of course the next day you know
     Maybe the alcohol has the same effect as when you have a glaucoma crisis and lowers the pressure?
    Already having a cerebral tension for fluoro I found that the stress situation increased my physical pain
     Knowing a little homeopathy I found that calcarea phosphorica 30 ch was really beneficial to me I’ll try soon with a higher dilution as 100ch to see if the effect could be even more in-depth

    Good luck everybody

    • Mary May 10, 2018 at 11:47 am Reply

      I recommend Magnesium Asporotate for healing and relief from pain.
      magnesium L-Threonate for brain fog
      B-12 for calmness and better sleep

  11. tarkonis May 17, 2018 at 8:39 am Reply

    Can you let me know where you derived the 1 third stat from, I see “From a cohort of 6,110,723 people, there were 339 cases of PTCS and 3,390 corresponding
    controls”

    • Lisa May 17, 2018 at 8:55 am Reply

      There are about 6,000 cases annually, and they attributed 2,000 of those to FQs. It’s still a relatively rare disorder, but when it happens, it appears that about 1/3 of cases are due to FQs. That’s my reading of it.

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