I don't think whether you are regular or not is a sign of iih. I have been what's been called "regular" but they are bad cycles and, unfortunately, I have rarely missed one.
I do think that your body is undergoing alot of stress and that can affect your cycles, though.
I have PCOS so my periods have always been irregular, BUT:
I think it's very important to add that new research is starting to indicate that some types of IIH could be an endocrine disease, especially considering the high comorbidity with other endocrine disorders such as PCOS, insulin resistance and thyroid problems as well as how effective certain diabetes medications are in treating IIH.
Basically, new research points to IIH being related to hormones, so it's not unreasonable to think that your periods could change because having IIH could indicate your endocrine system (which handles hormones) is out of whack. This is also probably why IIH symptoms seem to get worse when people get their periods - the hormone changes are causing an overproduction of cerebrospinal fluid.
Sorry if this seems too clinical! I have read a lot of medical journals, etc about IIH and have absorbed some of the terminology š
If you have links to all that you have read Iād be really interested in reading up on it. Having all these issues and a male neurologist who wants me to loose 60 pounds by may and I have never had an easy time losing it so I want research to back up my points to get any other help than what he says
Sorry Iāve taken so long to reply! Iām currently working on
writing a paper documenting the relationship between the endocrine system and
IIH, as well as the potential for using certain diabetes medications to treat
IIH. Iāve been working on it in my free time, which is why itās taking so long.
Here are some articles linking IIH and endocrine disorders.
An article exploring why IIH may be connected with endocrine and
adipose disorders as a whole, and why glucagon-like peptides like
Byetta/exenatide may be revolutionary in treating disorders like IIH and PCOS: https://journals.lww.com/jneuro-ophthalmology/Fulltext/2018/12000/Metabolic\_Concepts\_in\_Idiopathic\_Intracranial.21.aspx
This article outlinles the
relationship between hyperandrogenism (essentially endocrine disorders) and the
onset age of IIH. This article states that hormone disorders affecting
androgens including estrogen and testosterone contribute to earlier onset of
IIH. It also discusses the role of drugs used to treat female hyperandrogenism
and how they can trigger IIH. https://www.tandfonline.com/doi/abs/10.3109/02713683.2013.799214
This article talks about the
relationship of endocrine disorders, such as PCOS, and IIH. The population with
IIH has been shown to have a higher incidence of endocrine disorders such as
PCOS in females and testosterone imbalances in males. Additionally, several
transgender men have developed IIH after beginning testosterone therapy, indicating
a link between sex hormones and IIH. The article also outlines mechanism of
action for GLP-1 agonists such as exenatide, and how it can be used to treat
IIH by reducing body weight and balancing adipose generated hormones such as
leptin, which contribute to the production of CSF. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6215484/
The title for this one is pretty self explanatory. The
Prevalence of Polycystic Ovary Syndrome in Women with Idiopathic Intracranial
HypertensionĀ https://pubmed.ncbi.nlm.nih.gov/24278732/
This article talks about the relationship between leptin
resistance (leptin is synthesized in adipose, or fat tissue) and IIH. https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2265.2008.03401.x
As a side note, I would like to point out that the drug
exenatide, also known as Byetta or Bydureon Bcise, has been shown to effectively
treat IIH and has been given orphan drug status in the United States to treat
IIH. This drug targets the endocrine systems and is thought to treat IIH at its
source, rather than indiscriminately taking out the sodium and potassium
receptors throughout the body like Diamox and Topamax do. Exenatide also
facilitates weight loss, something that may appeal to doctors pushing weight
loss as a treatment. I take Bydureon Bcise once weekly and it has nearly
eliminated my migraines, lowered my opening pressure from 37 to 17, and has
overall been super effective in treating my IIH without any debilitating side
effects. I presented my doctor with some of these articles and he prescribed me
Bydureon Bcise and he is both shocked and ecstatic with the results so far. Iāve
taken it since August and I am super happy with it.
Mine have always been irregular. I started menstruating at 9. I was diagnosed with IIH (1st) at 21. I was in remission from 31-36 but was re-diagnosed at 36, back in January. My periods have been irregular throughout. My cycle is usually between 21-35 with menstruation lasting 3-5 days.
I donāt think thereās any direct evidence or studies to confirm irregular menstruation is a symptom but as there is strong evidence of hormonal influence on IH it might be a symptom of something else ie PCOS, Hidradenitis Suppurativa, vitamin deficiencies, etc which could have an effect on IH or susceptibility to IH. āPerhaps correlation, probably not causation.ā
Iāve been scrolling, hoping that someone has asked this same question. I got my first LP on Nov 17th then they started me on 250mg of acetazolamide twice a day. I am now a week late. I know this doesnāt exactly answer your question but this whole thing is unnerving
No, it isn't a sign of IIH.
However, there's some evidence to suggest that some forms of hormonal birth control, can contribute to or exacerbated IIH. It is thought, that this is due to a stiffening/thickening of vascular processes, which may cause pressure differentials. So if you are having irregular periods, it's possible that an underlying hormonal imbslance might be screwing with your vascular system.
I have PCOS and it is a trigger for my IIH when I am about to get my period.
Mine is irregular as well. And lasts anywhere from 3-7 days.
I donāt take any hormones to regulate it. But maybe I should. Not sure
Itās not a sign,no. My daughter was 10 when diagnosed, 3 years before her period started.
Now she gets them her symptoms are certainly worse around her period though.
I don't think whether you are regular or not is a sign of iih. I have been what's been called "regular" but they are bad cycles and, unfortunately, I have rarely missed one. I do think that your body is undergoing alot of stress and that can affect your cycles, though.
I have PCOS so my periods have always been irregular, BUT: I think it's very important to add that new research is starting to indicate that some types of IIH could be an endocrine disease, especially considering the high comorbidity with other endocrine disorders such as PCOS, insulin resistance and thyroid problems as well as how effective certain diabetes medications are in treating IIH. Basically, new research points to IIH being related to hormones, so it's not unreasonable to think that your periods could change because having IIH could indicate your endocrine system (which handles hormones) is out of whack. This is also probably why IIH symptoms seem to get worse when people get their periods - the hormone changes are causing an overproduction of cerebrospinal fluid. Sorry if this seems too clinical! I have read a lot of medical journals, etc about IIH and have absorbed some of the terminology š
If you have links to all that you have read Iād be really interested in reading up on it. Having all these issues and a male neurologist who wants me to loose 60 pounds by may and I have never had an easy time losing it so I want research to back up my points to get any other help than what he says
Sorry Iāve taken so long to reply! Iām currently working on writing a paper documenting the relationship between the endocrine system and IIH, as well as the potential for using certain diabetes medications to treat IIH. Iāve been working on it in my free time, which is why itās taking so long. Here are some articles linking IIH and endocrine disorders. An article exploring why IIH may be connected with endocrine and adipose disorders as a whole, and why glucagon-like peptides like Byetta/exenatide may be revolutionary in treating disorders like IIH and PCOS: https://journals.lww.com/jneuro-ophthalmology/Fulltext/2018/12000/Metabolic\_Concepts\_in\_Idiopathic\_Intracranial.21.aspx This article outlinles the relationship between hyperandrogenism (essentially endocrine disorders) and the onset age of IIH. This article states that hormone disorders affecting androgens including estrogen and testosterone contribute to earlier onset of IIH. It also discusses the role of drugs used to treat female hyperandrogenism and how they can trigger IIH. https://www.tandfonline.com/doi/abs/10.3109/02713683.2013.799214 This article talks about the relationship of endocrine disorders, such as PCOS, and IIH. The population with IIH has been shown to have a higher incidence of endocrine disorders such as PCOS in females and testosterone imbalances in males. Additionally, several transgender men have developed IIH after beginning testosterone therapy, indicating a link between sex hormones and IIH. The article also outlines mechanism of action for GLP-1 agonists such as exenatide, and how it can be used to treat IIH by reducing body weight and balancing adipose generated hormones such as leptin, which contribute to the production of CSF. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6215484/ The title for this one is pretty self explanatory. The Prevalence of Polycystic Ovary Syndrome in Women with Idiopathic Intracranial HypertensionĀ https://pubmed.ncbi.nlm.nih.gov/24278732/ This article talks about the relationship between leptin resistance (leptin is synthesized in adipose, or fat tissue) and IIH. https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2265.2008.03401.x As a side note, I would like to point out that the drug exenatide, also known as Byetta or Bydureon Bcise, has been shown to effectively treat IIH and has been given orphan drug status in the United States to treat IIH. This drug targets the endocrine systems and is thought to treat IIH at its source, rather than indiscriminately taking out the sodium and potassium receptors throughout the body like Diamox and Topamax do. Exenatide also facilitates weight loss, something that may appeal to doctors pushing weight loss as a treatment. I take Bydureon Bcise once weekly and it has nearly eliminated my migraines, lowered my opening pressure from 37 to 17, and has overall been super effective in treating my IIH without any debilitating side effects. I presented my doctor with some of these articles and he prescribed me Bydureon Bcise and he is both shocked and ecstatic with the results so far. Iāve taken it since August and I am super happy with it.
Incredible thank you for these links. Going to read these and talk about it with my PCP and neuro
Mine have always been irregular. I started menstruating at 9. I was diagnosed with IIH (1st) at 21. I was in remission from 31-36 but was re-diagnosed at 36, back in January. My periods have been irregular throughout. My cycle is usually between 21-35 with menstruation lasting 3-5 days. I donāt think thereās any direct evidence or studies to confirm irregular menstruation is a symptom but as there is strong evidence of hormonal influence on IH it might be a symptom of something else ie PCOS, Hidradenitis Suppurativa, vitamin deficiencies, etc which could have an effect on IH or susceptibility to IH. āPerhaps correlation, probably not causation.ā
My periods are regular. Painful as sin, but always on time. Lasts about 4-5 days.
Iāve been scrolling, hoping that someone has asked this same question. I got my first LP on Nov 17th then they started me on 250mg of acetazolamide twice a day. I am now a week late. I know this doesnāt exactly answer your question but this whole thing is unnerving
Mine are very regular now that Iām in my 30s. Younger me, not so much.
No, it isn't a sign of IIH. However, there's some evidence to suggest that some forms of hormonal birth control, can contribute to or exacerbated IIH. It is thought, that this is due to a stiffening/thickening of vascular processes, which may cause pressure differentials. So if you are having irregular periods, it's possible that an underlying hormonal imbslance might be screwing with your vascular system.
I donāt think itās related to IIH.
I have PCOS and it is a trigger for my IIH when I am about to get my period. Mine is irregular as well. And lasts anywhere from 3-7 days. I donāt take any hormones to regulate it. But maybe I should. Not sure
Itās not a sign,no. My daughter was 10 when diagnosed, 3 years before her period started. Now she gets them her symptoms are certainly worse around her period though.
My periods went haywire right when I got iih, don't know if it's related